PDA

View Full Version : Lyrica


xmarine
12-01-2005, 10:47 AM
Ive been using Baclofen for pain for about 1 1/2 years, it works pretty well, but now my Dr. thinks I should try Lyrica, thinking it will have less side effects. He thinks baclofen is a "dirty drug" and lyrica is cleaner, but after reading the side effects of lyrica I am nervous about trying it. It seems to have a lot more side effects. Has anyone ever used Lyrica? Should I try it or just stick with what works? I am on 40mg a day of baclofen, is that a lot? Any thoughts would help.

Thanks

metronycguy
12-01-2005, 11:05 AM
i really dont think lyrica has that many side effects, at least it doesnt have the sleepiness of neurontin, and i dont get the carb cravings. the good things about these meds is IMO they are much easier to come off of than narcotics. i only tried baclophen for a short peroid, its a much older med.
itd a anti spasm drug i think. zanaflex is the newer version of anti spasm i think. i dont beleive lyrica is a anti spasm

xmarine
12-01-2005, 11:34 AM
Yes your right Baclofen is an antispasm med, but for some reason it works for pain for me, dont know why. I guess I am a little nervous about switching to a new drug, I was wondering if anyone else has tried lyrica. Sounds like it might be worht a try with less side effects, but when you read the drug information sheets some of the stuff on there can be downright scary.

DEAN57
12-03-2005, 08:16 AM
I Just Got Off Licra And Had Bad Sides.i Tryed To Stay With It As Long As I Could Because It Took Away The Burning In My Feet I Was So Happy That The Burning Was Gone. After About 4 Days My Vision Was So Blurry Coudent Read Or Watch Tv. Then Confusion And Headaches Started Tryed To Stay With It But Coudent Drive And No Way Am I Going To Not Have That Freedom.it Took Me Several Days To Get Back To Old Self.i Have A Pump In And It Works Much Better Than Pills For Control Of Spasams.bacoflin Has Never Helped My Pain.

alan
12-03-2005, 08:17 PM
I'm in the process of figuring out if Lyrica is causing pain in my gums.

krisb601
12-03-2005, 11:19 PM
I take zanaflex and baclofen for spasms. I take morphine for pain. It works very well. It dosent make me sleepy, for some reason I cant fall asleep too easily. I take remeron and ambien for sleep at night and still have problems falling asleep.

razzle51
12-04-2005, 09:13 AM
Hi I took Bacoflen too and it worked good for a while , then stopped . I am now on Flexerill . I am hearing some good things about Lyrica . My dr. asked me if I wanted to try it , but I am on Ameritriptiline for now and it works . So if It aint broke dont try to fix it. I may try Lyrica in the furture.

xmarine
12-05-2005, 01:25 PM
I think i agree, if it aint broke dont try and fix it, im not sure why my doctor had an aversion to Baclofen, but I am now down to only 20mg a day and my pain seems to be tolerable, I have no idea why it works for me but it does so i am going to stay with it.

Thanks all.

razzle51
12-05-2005, 05:54 PM
well i decided to try this Lyrica and boy was I FLYING AROUND THIS AM . ENERGY I couldnt believe it . Did it effect you that way the first time you tried it. I cleaned 3 rooms and did the floor in the bathroom . wow .

metronycguy
12-05-2005, 07:44 PM
i wish! but i find lyrica a lot less problematic than neurontin, i have more energy and less sleepiness, with neurontin i never had a hard time sleeping,
with lyrica i still need to take a sleep med, the oxycodone i take at night wakes me up.

mike
12-05-2005, 10:17 PM
Metronycguy, I was wondering if you or any others knows the relative dosage of Lyrica vs Neurontin. I presently take 1800mg per day of Neurontin and I am wondering how that would equate to the dosage requirement of Lyrica which is suppose to be less. Lyrica is significantly more expensive if the dosage would be the same.

DavidHH
12-05-2005, 11:37 PM
I'm 10 days into trying lyrica- and just moved up from 75 mg to 150mg. twice a day (300mg toal a day). My Doc says its very unlikely that we will try more than 600mg total per day, as the studies suggest no benefit. So far sides have been very, very mild- slight sleepiness days 1-3, lots of energy and a mild euphoria since (or is that just some crypto-antidepressant side effect, lol). In other words i feel great. The character of my neuropathic pain has begun to change, from pure hellfire to something more electrical, but i can't say that its reduced- still 8+ on the scale at night (I spend a lot of time biting pillows and trying not to wake the neighborhood). I was told not to expect any real benefit before two weeks (or longer if we need to raise the dose again), but my neuro doc is hopeful.

David

PS- I hear Pfizer is handing out lots and lots of samples as they push this onto the market- it may be worthwhile asking your Doc to stock you up.

metronycguy
12-06-2005, 12:31 AM
i think 300 is the top level for pain control .
most of the stuff i was reading was saying 3 times a day for neuropathic pain, my doc said 3 times when i inquired about 2 times. i am at 150. 3 times 50 a day

DavidHH
12-06-2005, 07:56 PM
Metronyguy is quite right- the max recomended dose of Lyrica is 300 mg per day in divided doses. The drug literature suggest no aditional benefit in studies using 600mg.

David

PS- last night I had them first reduction in nightime pain in months! Maybe its working.

mike
12-07-2005, 08:46 AM
If indeed 300mg of Lyrica is the maximum dose, then it would be less expensive then Neurontin for a ninety day supply. That is certainly an additional side benefit.

alan
12-07-2005, 09:31 PM
I read in the MGH Braintalk forums that 300 mg. of Lyrica is equivalent to 1800 mg. of Neurontin. Sounded low to me.

metronycguy
12-07-2005, 09:46 PM
i am not sure if they did clinical trials with people with sci neuropathic pain, so hard to say if no added relief for sci will be found above 300 to 600.

DavidHH
12-07-2005, 10:08 PM
Indeed lyrica is off label for sci- neuropathy, pain related studies studies were conducted for diabetic peripheral neuropathy and post-herpetic neuralgia. In the latter, doses ofup to 600mg daioyn were found sometimes to be useful.

See www.pfizer.com/pfizer/download/uspi_lyrica.pdf

David

GoBig
12-07-2005, 10:51 PM
I have used neurontin, baclofen, and a whole host of Gaba receptor drugs. They all seem to be the same for me. I am currently taking Lyrica and use a baclofen pump. I still do not have relief. Look at me I am complaining, is that allowed. Next week I will get a trial for a neuro-stimulator. Is anyone else the pround owner of one of these gadgets. If so how is it going.

metronycguy
12-07-2005, 11:48 PM
i have half a neuro stimulator now:agog:

GoBig
12-08-2005, 07:36 PM
Whats up with that. Does it only cover one leg, part of the time, or have you only made half the payments. Let me know how you feel, dont keep me in suspense. My test period is next wednesday.

DavidHH
12-08-2005, 08:48 PM
Well at day 12 or 13- the lyrica has finally started to kick in at 300 mg per day - I've had 2 nights of about 50% pain relief. Sides continue to be relatively minor - slight somnolence, some reduction in fine motor coordination and balance, which was pretty poor to begin with. All in all a great trade off.

David

metronycguy
12-08-2005, 09:07 PM
Whats up with that. Does it only cover one leg, part of the time, or have you only made half the payments. Let me know how you feel, dont keep me in suspense. My test period is next Wednesday.
:D i had problems with the electrode in my dura, it kept spitting sutures and getting abscess around the sutures. after 2 attempts to open and drain and check for infection, the wire and electrode were removed, they had to open the incision on my hip where the generator is to remove the lead. i had th staples and stitches removed today, probably attempt to put a new lead and electrode in about a month. this time going to try and put the lead lower into my nerve root.
my pain is bizarre, it changes, however i think some of it was from the AFO Strap or high top shoes that may have compressed the nerves around the ankle. even though the pain would start on the ankle every night around 8 pm when the shoes were off, the pain stopped around spring time, thats when i went to low sandals full time, and could use the AFO less.
lyrica doesnt seem to do anything for the stenosis shocks i have. however it hink it helps me get a shoe on, the foot is vey sensitive and i couldnt weat a shoe for a long time

Romayne
12-10-2005, 04:48 PM
Hi all...

I just found this forum and found it is quite good so I just joined and am posting my first post. I have been on Lyrica for 6 days now, first 5 days were one 50mg at bedtime and then 2 a day for a total of 100mg daily. No side effects or anything yet, but I know it may take time to get working if it does. I am also on Xanax, .50mg as needed and 100mg Zoloft once a day. So, glad to meet you all and I hope I can learn something by coming here and/or, in someway, be a benefit to the forum.

Gene in New Jersey

Lois
12-10-2005, 05:25 PM
Glad to have you! I just started with Lyrica and notice no difference with the pain just yet ~ it's only been 2 days since I've taken 150 (50mg 3 X a day)mg.
I'm also in Jersey...

DavidHH
12-10-2005, 07:02 PM
Jersey and NYC seem to be taking over the thread!

I'm on Lyrica a little over two weeks now (counting was never a strong suit) and at 300 mg a day for the last week. It is only in the second week that I've noticed improvements in symptoms - pain down about 50% (from an 8-9 to a 4-5) I can sleep through the night for the first time in months ( I was injured 6 months ago - pain started in month 2)

No significant sides ( a little sleepiness after each dose increase that fades over the first few day) I have noticed an unfavorable change in daytime pain - much more focussed "electrical" style pain as opposed to my usual burning. Very distracting and getiing a little worse each day for the last 4-5 days. I'd say a 6 on the scale today. I talk to my neurologist (Bright and caring doc by the way) Monday and see what he thinks.

David
also in Jersey

Bke
12-15-2005, 03:14 PM
Hi,
I started using lyrica end of september 2 x 75mg and went up to 2 x 300mg. The pain (burning) was a bit less but the side effects were too much to handle. Immediate increase in appetite and weight gain, diziness and less spasms in my legs (which I use/need for transfers). The spasms couldn't be linked to the lyrica by my Dr. but the day after I took my last 75mg capsule, the spasms were back! (and no appetite anymore)
Last week, after a week of intense pain, I decided to give lyrica another chance. Appetite's back, spasms are gone, no diziness until now. And pain is do-able... Maybe I have to give it a bit more time this time; maybe the side effects will disappear.

Romayne
12-15-2005, 04:48 PM
I have been on Lyrica for 10 days now, no side effects and no relief in pain. I am only on 100MG per day as my doctor wants to wean me on it slowly. I will wean on it slowly until I get to 300mg a day. By the way, I thought Baclofen and Zanaflex were for spasticity and not for spasms. I was on both, at different times, for spasticity in my legs, a few years back and could not handle the side effects. I also remember hearing that Quinine is good for spasms. Oh well, what works for one will not work for another.

txdiva04
12-17-2005, 08:21 PM
I need some help! I have been in really bad pain for about a year( my injury has been only two years old). Initially my doctor treated me with Gabpentin and each week we increased it until we maxed out. Since then I have tried Baclofen, Topamax and several others, too many to name. So the next move was surgery. I was diagnoised with a syrnix, two shunts were placed and I was sent on my way. (still in pain) I went to Monterry, Mexico to have my stem cell transplant. Thats were I was given Lycria, I perfer Gabpentin but I'm maxed out an still in pain! Currently I take baclofen,zanaflex which I love, doxepen(dr. decided I should go the anti-depressent route), and oxycondone, which keeps me awake!

I just need some reflif....HELP...PLEASE!!!!

oh by the way i'm c5-6 incomplete, any advice would be great no awesome

metronycguy
12-17-2005, 08:29 PM
by maxed out on gabapentin what do you mean? what dose?
how much lyrica per day are you taking? i know about the oxycodone keeping awake routine. i have to take a sleep medication timed closely with the oxycodone.

razzle51
12-18-2005, 01:09 PM
I started Lyrica too and immediate carvings for food. Not for me . I went thru 40lbs of Neurontin , so must move on to something else . Romayne you said you dont have any side effects , have you gotten on the scales lately.

Romayne
12-18-2005, 07:27 PM
Razzle51,

My appitite is the same but remember I am only on 100mg a day.

Gene In New Jersey

DavidHH
12-27-2005, 06:15 PM
I'm at about 5 weeks on lyrica- my current dose is 350 per day (200 am, 150 pm). It's giving me excellent nightime pain control (from 8-9 down to 4-5 on a 10 point scale). Daytime control is another issue. My night time pain is the classic "boiling in oil," but daytime has more of an electrical/abrasion quality. My neurologist is slowly increasing dosage, in hopes of avoiding a second med.

Sides- a little somnolence - mostly fades 2-3 days after dosage increases. A bit of insomnia, feelings of high energy. A little loss of balance, gross motor skills (not a strong point for me anyhow).

Scary proof of effectiveness: Forgot my AM dose Christmas day, drove 1.5 hours to Christmas dinnner. The drive home in the early evening was one of the worst pain experiences of my life. I now carry an "emergency supply in my jacket.

David

razzle51
12-28-2005, 05:02 PM
Romayae I am only on 100 mg a day too.

Romayne
12-29-2005, 03:42 PM
Razzle,

This is my 20th day at 100Mg per day of Lyrica. No side effects whatsoever and no pain relief whatsoever. I stilll eat about the same, in fact, perhaps a little less because of the pain. My doctor has gone away until the 4th of January at which time I will tell him I want to titerate my dosage upwards and slowly get to 300mg's a day. Also, I started physical therapy last week, 3 sessions so far, and of course I am suffering from that as I am getting great hands-on manual physical therapy, not just a bunch of exercises to do. Oh Well, as the Navy Seals say: "Pain is weakness leaving the body". But I am not nor was I ever a Navy Seal, I was in the Air Force. LOL

Have a great one everyone,

Gene in New Jersey

razzle51
12-31-2005, 12:02 PM
Wish all the best with the med . Happy New YEAR . Roz

maryonwheels46
01-06-2006, 07:35 PM
I started taking Lyrcia 2 wks ago. I haven't noticed any change but I am only taking 75mgs at night. I want to up the dose. I take 400mgs of Neurotin 4 times a day for years. I don't know if it helps or not. Now from what I understand the Lyrica is suppose to do the same thing Neurotin does. So why take both. I think my Dr want to up my dose of L. and see about slowly getting off N. I hope so. If it helps my appetite I will be glad.
Mary

DavidHH
01-06-2006, 11:22 PM
Now at 450 a day (150mg tid). With this increase no new sides or problems (except perhaps that I get a bit rubbery at hour 2 to 3 after each dose. I'm getting better than ever night pain control (now a 3, was originally 8 or 9 on a 0-10 scale). But I'm still having problems with daytime neuropathic pain.

David

imnomis
01-24-2006, 12:01 AM
DavidHH - Any updates on your experience with Lyrica? Simon switched over to 300 MG of Lyrica two times a day from 900 MG of Neurontin four times a day. It took about a week and a half to make the switchover but he is now on Lyrica only. He hasn't noticed a change in the pain level yet but really likes the idea that he'll only have to take 2 capsules a day instead of 12. Our insurance company should like it too. It's way cheaper in the long run. I just hope that it works for Simon.

DavidHH
01-24-2006, 12:17 AM
Still holding at 150mg tid (450 mg per day) with fair to good nighttime relief and poor daytime relief. I talk to my neurologist this week - so it may change.

David

nick
01-24-2006, 12:02 PM
I just started to take Lyrica 4 weeks ago. I'm currently on 50mg 3x's daily.
I usually take it at 8 a..m, 2 p..m., and 8 p.m. I have missed a couple of pills in between over the 4 weeks but have honestly noticed no difference in my neuropathic pain.
I have however noticed that if I don't have a bm for a couple of days the burning in my feet and calves is tremendous. 8 on a scale of 1-10.
Is it possible that being constipated can cause all this pain. If I watch what I eat and keep the stool soft then I have really no pain, but if the stool becomes firm then the burning increases and my stomach becomes very tight and painful.
I'm T-10 complete. Just wondering what others thoughts are on this. -Ed-

Lois
01-24-2006, 07:08 PM
I was also on Lyrica 50mg 3X a day for several weeks after getting off Neurontin (12 capsules a day) neither of which seemed to do anything for the burning pain. I feel like my hands and feet swelled and even my eyesight was blurring with the Lyrica so I'm weaning myself off it totally to see if there's a change. Thank goodness for elavil which I take 50mg at bedtime and sleep like a log (do logs "sleep"?). I'm wondering if a lower doseage during the day (10 mg) will temper the burning. I do know it's what causes the sweet tooth! Have not really considered the effects on the stool.

Blinky
06-19-2006, 11:46 AM
I am gradually taking Lyrica and increasing it slowly because I am so sensitive to meds with side effects..have a lot of anxiety from bad experience in the past from medication. I started with 25 mg for two weeks and now up to trying 75 mg for two weeks. I am taking it for a burning sensatioin in my arms and upper torso. I am also taking Ativan .50 mg three times a day. I have a lot of side effects but trying to tolerate them. I am going to try and hang in there. Seems like every time I increase I feel great the first day and then the side effects kick in for days....then I start to feel better again....not great but better. Then it is time for another increase. Seems like it is going to be a slow process. With taking the Lyrica at 75 mg at bedtime isn't really even the recommended dose to work for the burning. My goal is to get at the right dosage of Lyrica, stop the Ativan and get on an antidepressant. I am not sure how the Pschyitraist that is handling the med portion is going to do this yet. Would love to hear any suggestions? Thank you

Hi all...

I just found this forum and found it is quite good so I just joined and am posting my first post. I have been on Lyrica for 6 days now, first 5 days were one 50mg at bedtime and then 2 a day for a total of 100mg daily. No side effects or anything yet, but I know it may take time to get working if it does. I am also on Xanax, .50mg as needed and 100mg Zoloft once a day. So, glad to meet you all and I hope I can learn something by coming here and/or, in someway, be a benefit to the forum.

Gene in New Jersey

firesmurf
06-20-2006, 09:55 AM
i habve had a really starnge time on lyrica so far.

i had been on neurontin a few years ago and neveer ever had any sort of side effects til they upped the final dosage to 3600mgs and my vision blurred.then when I started at my PM he switched me from neurontin to Gabitril,allthat did was want to make me sleep,constantly and ened up only taking it at night.it remained a great sleep aid(still made me horribly tired even after two years on it,wierd really)so i continued you take it despite the fatc that it did nothing for my actual pain,anywhere.well I started lyrica like the week before last and I have had some of the best affects on my pain and even the swelling in my RSD knee went down about halfway,that in itself was truely amazing as nothing has even touched that swelling in over two and half years since i was actually Dxed with RSD in my knee.this also for the first time,had a true affect on the level of my central pain in my L arm an shoulder blades.

now the down side.after just the initial dose i took at around 8;00pm after I taperd off the gab,well both of the bottoms of my feet just started burning about an hour after I took that initial dose.what was really the wierdest tho was I had never ever had any sort of actual problems with my L leg or foot before of any kind,despite the fact that I do have a vasomotor malfunction in both legs.just wierd.

but the next morning,i noticed some of the swelling in my lower leg(which is not too bad but still there)went down and that part for the first time in a very long time,actually looked normal,totally normal when compared to my L one.wow i was impressed.then the next day after dose two before bed,the knee swelling went down about half.the thing is tho by the second nights dose,about an hour after it,both of my legs just really started to ache like crazy.never had this before either.both legs had a deep bone/muscle type ache that normally is just in my RSD knee,in the head of the femur.

after I added the second pill per day after the initial three days on just the one nighttime dose,things kinda hit the fan.exactly three-four hours or so after i took that morning dose,all of the sudden,like out of no where,my vision got just horrible and i started to get double vision but only in my L eye which has horners syndrome.then i started walking like I had just drank a six pack or something.i was stumbling around and running accidently into walls and stuff.geez it was just like a severe drunk or something.then around 11;00,like clockwork,those symptoms would just dissapate away for the day.strange,really as this little scenerio just kept on repeating itself for the next three days.on that third day i was supposed to have started that third pill so my total daily would have been 150 mgs.well I ended up calling my pm and was told to drop the second pill and not to even attempt to add that third one til I could actually sit down with my PM and discuss this.so I am currently just on the one nite time 50mgs.and in kind of a holding pattern til the 6th of july wwhen I see my pm again.

what really bums me out is that this is the first and only med that has had any real effect on my pain levels at my worst two spots.the central and the RSD,and I had more energy and my BMs finally were moving sooo much better as before that i have been suffering with horrid constipation.i really really want to try and stick with it,but man my eye and balance/co ordination thing is just soo flippin bad.what I do not understand at all is just the cyclic nature of my side effects.they never ever deviated from the take my meds at 5;30am,then at between like 8;30-9;00am,bam instant drunk and totally blurry/double vision crap just hit.then around 11;00,boom it was all gone but left me with a spaced out feeling during the rest of the day.

this stuff also made my kidneys kind of 'swell'?and actually moved my R kidney more to the front now/right along the lower to mid rib cage.i amgetting a renal oUS done this week to see for sure how it is actually lying in there.but once i dropped that second pill,the majority of the swelling went down but i still can feel that kidney there only not quite as pronounced as before.i have polycystic kidney disease but i just happened to have both my kidney and liver labs done two days before I started the lyrica and amazingly,despite the very definite cystic damage to both the kidneys and the liver,all of my labs are still within the norm ranges.go figure.

i know that lyrica is metabolized mostly in the kidneys but wow I never expected that to happen.nothing has ever actually made my kidneys swell like that (except for the ongoing creation of the polyglobs of cysts).but this was a very sudden onset that actually went down once i went back to just my nite time dose.

I for the life of me tho would love to know just why my major side effects would follow a particular cycle like that??its really bizarre.

after reading the Rxing lit,wow this,like every other anti siezure med,has some pretty devitating possible side effects to it.but these are seem to be way beyond the kind of "normal" type of the anti S type meds.it states as a rare side effect something called cerebellar syndrome?this is in the area of the brain(the cerebellum) that governs eye movements and balance and co ordination.i got a bit freaked when I looked that up as this was my side effects.does anyone know anything about this particular syndrome?it seems kind of freaky that my side effcts are totally seeming to be like this exact syndrome,ya know/i also have my aneurysm coiled that actually sits right inside the left superior cerebellar artery,just seeing the cerebellar kind of freaks me out,like could there possibly be some sort of a connection there?doc Wise?any clue to this??

I am hoping now when I go back to my PM that I will be able to easily add the second pill to my already one at night.I would be more than happy to just take the good effects I can obtain at two without even attempting the third,just to have SOME affectation finnally on my worst pain areas.I just cannot handle those devistating side effects.I would never ever even be able to attempt to actually drive myself anywhere on this morning dose if I had to.

oh,just wondering about something rather odd here.for those of you who have ever suffered from some sort of blurry vision or a bit of double vision?i had a really wierd type of double(kind of more of a "superimposed)vision.instead of it being from like a side to side type of thing.mine was up and down.is there any significance to seeing it up and down as opposed from the normalside to side type of double vision?i have had double vision before fromcertain things but it had always been side to side,never up and down,well mostly up,like something was lying on top of whatI was looking at but only slightly moved up?like it was just moved like a half an inch upwards/i don't know how else to explain it but was just wondering if seeing thing upwards like that had any special significance as in this being an affectation or indication of something specific?its probably normal but it just seemd a bit odd to me.

sorry this ws another one of my 'rambles" just wnated to add my bizarre experience with this stuff to the mix.marcia

elja
09-16-2006, 12:02 AM
Hi all, I have switched from Neurontin 600 mg 4 times a day with an incress if high pain up to 3600 mg a day. After ten years of being on it I was switched to Lyrica 150 mg 2 x day, I continued with my neurontin but had cut back to 600mg 2 times per day. I did in the start had felt a great amount of engery, and was able to do more. After I was told to stop the nurontin and just the lyrica I had little effect with this and noticed my levels of pain getting higher and un able to block out. My left arm started to begain to shake with out control. My fingers before only ring and little always felt like needles and pin now all fingers have this feeling. My dose was incressed to 75 mg more at night, then additional 75 mg in the day also which brought me up to 225 mg 2x daily. I still have not received the same freedom of a day with out pain. I wear out much faster and take cat naps during the day. I have had no problems with vision. Now I was given additoinal 75mg to take at night It just seems not to have the effect. I am now starting to have the pains which I had before being on Neurontin in 94. I am often dropping forks while trying to eat, I have greater loss of feeling beside the tingeling in arm at a constance. The area where damaged center of left back, and base of left neck have incressed back to orginial time of injury. I meet with my pain doctor in early October and will request to be replaced back on neurontin.

I do not know why I have not had such little effect with this drug. I had tried very hard the entire summer to keep my weight down, which I had dropped 46 pounds by diet and biking ( only able to ride sitting down and on level ). Has anyone lost a lot of weight do you think this would of had an effect for the drug to work correctly.

Linda L. Brown
09-16-2006, 01:21 PM
I have just stopped taking Lyrica 75 Mg. once a day. I only took it for about 2 weeks and at first I thought it was wonderful. After just one day the nerve pain was so much better. It seemed like a mircale. Then the feet and ankles started swelling and then up to the knees. Doctor said it was side-effects from the medicine. So I stopped that and now they have me on 400mg. of neurontin and the pain is now up to my back. I had the same thing happen with gabitril. Now I don't know if I should just stop the neurontin and go buy a pack of cigarettes and give up. (I quit smoking several years ago but right now it sounds wonderful) Have any of you had problems taking these drugs?

mike bauer
09-17-2006, 09:42 PM
I dont thiik Bachlofen is rarely thought of as Pain Drug. As i understand it... it dosnt affect the Pain Edorphens or whatever at all. That being said, its still the king of Spasm drugs and copy drugs are all chasing Bacholfen. lastly, Lyrica seemed to work for me at first then.. back to terrifying burning pins and needles. Now on Morphine??? Who knows... I think I still need to keep searching... maybe somthing new is on the pain horizon?? I hope so. Thanks,,

Kell
09-19-2006, 12:48 AM
I have been in chronic pain for over 6 years. I stayed at the same weight for the first 4, then I was put on Lyrica. In the last 2 years I have gained 20 pounds. :cry: I did notice a difference in how the Lyrica affected my pain level versus the Neurontin I was on, but I was only on 900 mg of Neurontin which I was told was a low dose. The other problem I had with Lyrica was blurred vision - to the point that the max I can be on and still read a book is 150 mg.... they had me on a higher dose and it was really hard to drive - if I would look in my rearview mirror and then back at the road there was a delay in re-focusing on the road - this is what got my Dr. to reduce me to the 150.

Does anybody know if the weight goes away when you quit Lyrica?
Do you have to go on major diets and exercise programs to lose the weight? (unfortunatally exercise is basically impossible due to my pain)

Any advice on the weight loss thing would be wonderful. I have a distorted body image and hated my weight BEFORE the extra 20 lbs - now I just feel hideous. :( If you are afraid of gaining weight, I would not recommend using this drug.....

Kell

metronycguy
09-19-2006, 10:12 AM
I don't think Bachlofen is rarely thought of as Pain Drug. As i understand it.. I hope so. Thanks,,
they prescribe baclofen for pain, they tried it with me , skelaxin and zanaflex are also prescribed for pain. i guess with baclophen its causes some of the same responses as the newer zanaflex and skelaxin

Max
09-20-2006, 09:57 PM
NEW EMEA ANNOUNCEMENT OFFERS RELIEF TO THOSE WITH CENTRAL NEUROPATHIC PAIN
19-09-2006 15:37

LONDON, September 19 /PRNewswire/ -- This week, the EMEA announced approval of Lyrica(R) (pregabalin) for the treatment of central neuropathic pain. Central neuropathic pain results from damage to the central nervous system and is a chronic, debilitating and under-diagnosed condition that can have a significant impact on a person's daily quality of life[1].
Pregabalin, a treatment with analgesic and anticonvulsant properties, was licensed for the treatment of peripheral neuropathic pain (resulting from damage to the peripheral nervous system) in July 2004[2]. This new central neuropathic pain indication is the first of its kind specifically for this patient population and was approved based on a trial in spinal cord injury patients with central neuropathic pain.
In response to the news, Paul Smith, Executive Director of the Spinal Injuries Association added
"Neuropathic pain can be a major problem for spinal cord injured people as it can have significant impact on the quality of our lives. We welcome all new treatments that can help tackle the almost unbearable pain that many of our members face daily".
Disease overview - The pain, causes and treatment
- Pain experienced by those with central neuropathic pain is quite different to those with nociceptive pain (caused by injury to body tissues e.g. cut, bruise or broken limb). Neuropathic pain is often described as feeling like 'burning', 'shooting', 'stabbing' or 'electric shock-like' sensations[1]
- Many conditions can cause central neuropathic pain, including:
- Multiple sclerosis[3] - Stroke[4] - Spinal cord injury[5] - Brain/ spinal cancer[6]

- A pregabalin study - the largest clinical trial in patients experiencing central neuropathic pain due to spinal cord injury conducted to date - demonstrated that:
- Patients on pregabalin experienced a significant reduction in their pain compared to placebo - Pain relief was rapid (within 1 week) and was sustained throughout the 13 week trial[7]

References
1. Dworkin RH, Backonja M, Rowbotham MC et al. Advances in neuropathic pain: diagnosis, mechanisms, and treatment recommendations. Archives of Neurology. 2003;60:1524-1534
2. LYRICA Summary of Product Characteristics. Pfizer Ltd.
3. The MS Information Source Book. National MS Society. www.nationalmssociety.org (Accessed September 2006)
4. Stroke Association. Fact Sheet 'Pain After Stroke'. www.stroke.org.uk. (accessed September 2006)
5. Berg B. Central Pain Syndrome Alliance. Fact sheet 'Who gets central pain?'. www.centralpain.org. (accessed Aug 2006)
6. Farrar JT. Treating neuropathic pain and the neuropathic pain patient. www.myelitis.org/pain.htm. (accessed September 2006).
7. Clin J Pain 2002;18;350-4.Sidall PJ, Cousins MJ, Otte A et al. Pregabalin Safely and Efficaciously Treats Chronic Central Neuropathic Pain After Spinal Cord Injury. Poster presented at 24th Annual Scientific Meeting of the American Pain Society, March 30 - April 2 2005. Boston M.A.


http://www.itnews.it/risorse/EuroNews,Zj0xNDM2MzU1

anneraven
10-12-2006, 03:03 AM
I've just started using Lyrica for pain in place of Neurontin, which I had been using for almost 10 years. I like the Lyrica better because I take fewer pills. The only side affect I noticed was in the first few days. I felt a little loopy, but after that I was fine. I still take Baclofen for spasticity. I didn't know doctors are prescribing Lyrica for spasms. Sure hasn't made any difference with mine.

Mcdom57
10-12-2006, 04:20 AM
Hi - I am new on this forum - but an old hand at internet support groups - been banned once from healthboards - never really fit in at Brain Talk.

Pain isolates me and keeps me from having a social life.

When it gets bad (like now) and I can't sleep I roam around - I recently started taking Lyrica but find that it makes me very tired and wobbly - I can't take it on days I have to work.

It seems to work on the burning pain but not the grinding ever-present spinal entropy.

Pain is my constant companion and most days it drags me to the abyss.

I have medical issues in many body zones - a deformed back that has lead to scoliosis, acelerated and early onset arthritis possibly from a traumatic car accident when I was 2, bone spurs all throughout my spine, spinal stenosis, degenerative disc disease, interstitial cystitis (a very painful and annoying bladder disorder), uterine fibroids, and the occasional carpal tunnel attack.

The back and bladder are the worst. I have had these diagnoses for many years - the arthritis when I was 19, the bladder issues when I was 7. Now I am in my late forties and I feel 90. I use a homemade cane to balance and walk with - made from an old metal mop with a rubber crutch piece on the bottom.

My right leg and foot are constantly numb and burning from the stenosis.

The pain worsens upon movement so I cannot walk anymore like I was accustomed too - an hour a day every day for nearly 8 years.

It is hard to do the everyday things along with work. I don't have a social life anymore - too exhausted from battling the pain all day.

I have to work although I don't know how much longer I can withstand the struggle.

Most days I wish I would die. But I keep going on - I laugh at myself a lot.

Knowing that I cannot look forward to a pain free moment is wearying.

I am positive that a large percentage of my accompanying depression springs from undertreated pain issues.

The meds I take relieve it a bit, but not enough to do much more than the basics.

And the meds are hard to come by .......

LBUSH49
11-13-2006, 12:04 PM
I started Lyrica 5 days ago now , even with my narcotic medication I'm still having pain , it gets a lot worse when it rains , like today my pain on a scale 1-10 is about a 7 . I'm taking 75MG 2x's . This medication was prescribed by the pain clinic , my primary DR. asked me if I ever was on Neurontin and I told him yes and it didn't seem to help , and he told me Lyrica is like a stronger Neurontin and he thought it might help , so far not that much the first few days I was light headed it felt like I drank a 12 pack I don't drink ,but that was the only way I can desribe it I still had pain in my flank area in my back . My back hurts mostly the day before it rains, the day it rains , and then the day after , I guess I should say just the changes in weather ,I'm hoping maybe after another week or so maybe then it might help me , Tomorrow I go see a Neurosurgen , I'm hoping he can help tooI've already gained 3 lbs in 5 days it seems like I'm always hungry , and before when I was constipated somebody recomended eating some prunes at night and that really worked out well , no diarea , but a normal bowel movement : LBUSH

David Berg
11-14-2006, 12:55 AM
Good luck with your doctors appt tomorrow. Just keep in mind that neurosurgeons usually seem to think of surgical solutions quicker than others simply because that's their speciality. I hope you can find some answers.

firesmurf
11-14-2006, 10:48 AM
Hey LB, i do believe it was me who recomended the prune thing.this is what i started doing(old grandmas recipe for constipation that i just happened to remeber and thought i would give a try since nothing else was working)about two months ago with the best results so far out of anything and everything else i had tried.i guess it pays to listen to our grandmas.

the thing i found when trying lyrica was the effects it had on my eyes(horrid vision blurring and my eyes would cross and uncross,bizarre really)and also the feeling inmy legs like i too had just drank a six pack or something.tho this stuff had been the only thing that even touched some of my central pain and also had a positive effect on the overall burning of the RSD knee,i simply could not take the side effects anymore and had to drop it.i also noticed a huge lifting of my really horrid depression when i went off of it and all anti S meds all together for one month just to really gage the overall level of my pain without any anti S meds since i had been on them non stop since the day of my first fusion surgery while still inthe hosp back in 01.

unfortunetly i do need something like the anti S meds in order to not want to jump over the highway overpass down the street.this just sucks.while lyrica seems to really help alot of peoples neuro pain,man the side efects for some of us,from what i have read on several forums,have been pretty dramatic.

welcome Mcdom, while its good to have another voice here and experience,i am really sorry that you even have to be here.as well as the rest of us.marcia

LBUSH49
11-14-2006, 04:02 PM
First of all thank you David , and Firesmurf ,The DR. I saw today came highly recomened by 2 other DR.'s as being the best Neurosurgen In New England , He was very nice , and siad he doesn't want to operate that would be the last resort , he only got to see an X-RAY due to me having a Spinal Stimulator , so he's ordering up for me to have a cat scan , I can no longer have a Mylogram as He said I'm high risk where I shot a blood clot in each lung after the last one , I also found out I have Kidney Disease that none of my Urologist told me about , he said I have swollen and over sized kidneys ,may be that's my problem , he also wants them to increase slowly my Lyrica to the max level ,But I have to becareful on that too,where I have a sezure disorder ,, I'm telling you it looks like things aren't going to change to fast . I will find out tomorrow about the increase of Lyrica due to that DR. nott being in the office today ,I'll have to wait until tomorrow , but tomorrow never come because when it tomorrow then it becomes today ;LBUSH

Susan M
11-14-2006, 04:24 PM
Has anyone heard of Lyrica messing with your complexion? I've always had great scandanavian skin and it seems sice I started Lyrica mid-July, I am continually getting blotchy, red spots/rashes on my face. It is not acne.

LBUSH49
11-14-2006, 04:36 PM
Hi Susan I've been getting brown spots all over my face different sizes and different shapes and when I brought this to my DR afraid it mightbe some type of cancer , he told me that it was just aging spots that we all get them , so I don't know if that's true or not , I do take 16 medications a day too . ;LBUSH I had a big fight with my daughter and I didn't do anything wrong read my post in life

c6;c7;
11-14-2006, 08:19 PM
Hi Susan I took Lyrica for a short time it nothing for me I felt worse and went back to Nerountin. While I was on it myside affects were sores in my mouth skin break outs and blotchy red marks on my neck.

rollin64
11-15-2006, 07:35 PM
hey yall with the red spots? what did they look like? i noticed two really dark red spots near my ankle a couple of weeks ago, that came up for no apparent reason. they don't blanche when i press on them and they showed no signs of going away until today i noticed they're kind of peeling, but still deep red. they don't have a scab but feel raised a bit.

okay...now today theres one on my collar bone that looks like the same thing. i'm gettin scared. he just upped my lyrica to 300mg a day.

has anybody else heard of this being a side-effect? lyrica is the only new med i've started.

alan
11-15-2006, 09:02 PM
I'm at 300mg a day (3 x 100) again, with no relief (again.) Doc wants to go higher, so I will - what the hell.

Still can't get an ortho to care about my shoulder blades or spine. What good are they?

rollin64
11-15-2006, 09:20 PM
Still can't get an ortho to care about my shoulder blades or spine. What good are they?

i know what ya mean here alan. they blame mine on muscles. :thinking:

Susan M
11-15-2006, 09:39 PM
Wow-it looks like I'm not alone. Just as I suspected. The blotches are in patches--raised tiny bumps and the skin around is red. I didn't take a dose (50 mg) from 6 am yesterday to noon today--blotches and redness completely gone. Dry, flaky skin remaining. Time to change, I think.

metronycguy
11-15-2006, 10:02 PM
susan, you know now that you brought it up, i remember getting weirds skin stuff. i couldn't place it , but it could have been the lyrica.
bowels got screwed up on lyrica.

rollin64
11-16-2006, 11:20 AM
Wow-it looks like I'm not alone. Just as I suspected. The blotches are in patches--raised tiny bumps and the skin around is red. I didn't take a dose (50 mg) from 6 am yesterday to noon today--blotches and redness completely gone. Dry, flaky skin remaining. Time to change, I think.

this sounds the same. i haven't taken any since 4 pm yesterday. hopin it goes away quick.

Susan M
11-16-2006, 11:47 AM
I have a call in to my physiatrist. I'll report on the outcome.

metronycguy
11-17-2006, 02:08 PM
i am just starting lyrica again, for some reason my pain levels have skyrocketed?
i used to be able to get through the night with 10 to 15 mg of oxycodone over the last year, in the last 2 weeks i need 50 mg and more , and i still am not comfortable.
i really don't want to start on Oxycontin, mainly since i don't really like the way oxycodone makes me feel

rollin64
11-18-2006, 03:31 PM
I have a call in to my physiatrist. I'll report on the outcome.

please let us know. the one on my collar bone is gone.

Susan M
11-19-2006, 07:03 PM
Well, my physician was not much help. Pretty ridiculous, really. The nurse called me back to read a statement to me from my doctor. She said I was experiencing autonomic dysreflexia (had trouble pronouncing it). I said, no, I know what that is in this is not AD. She went on to read that my doctor said to stop taking the Lyrica for one week, if my skin completely cleared up, then it is the drug that's causing the problem. I'm to call back after that.

I felt like saying "Duh". I hate playing these games--physicians have too much control over our lives. They probably don't like it any more than I do.

rollin64
11-19-2006, 08:10 PM
lol, it's kinda scary actually when we know more about whats goin on than our dr's do. :p

i thought we weren't suppose to just "STOP" taking these these type meds cold turkey. :thinking:

i just have a feeling that not long from now we'll be seein the television commercial sayin.....

"if you or someone you know has had suicidal thoughts or died after taking the drug Lyrica, call 1-800-GINY-PIG, you might be entitled to a settlement check."

Susan M
11-19-2006, 09:13 PM
Isn't that the truth!

Day 2 now--skin still a little dry and flaky, but redness cleared and bumps almost gone. No issues, so far, with stopping cold turkey-except the miserable tightness in my arms has returned which is why I was taking Lyrica to begin with.

rollin64
11-20-2006, 05:12 PM
this is my 4th day off. nothing weirds happnin to me. like you....my feet are starting to burn again. red spots going away. still red, dry an flaky but it does blanch now when i press on it.

i really hate to quit taking it because it really was helping with my neuro pain. if someone else didn't have the same thing happening to them i might question the cause. but that has to be what is causing the spots since thats the only new med i'm on plus they're going away now that i quit.

Joseph J. Kafka
02-06-2007, 03:03 AM
[quote=xmarine]Ive been using Baclofen for pain for about 1 1/2 years, it works pretty well, but now my Dr. thinks I should try Lyrica, thinking it will have less side effects. He thinks baclofen is a "dirty drug" and lyrica is cleaner, but after reading the side effects of lyrica I am nervous about trying it. It seems to have a lot more side effects. Has anyone ever used Lyrica? Should I try it or just stick with what works? I am on 40mg a day of baclofen, is that a lot? Any thoughts would help.


Side Effects of This Medicine http://www.nlm.nih.gov/medlineplus/d...di/500647.html

A dangerous drug ... stick with neurontin.

Joe

Joseph J. Kafka
02-06-2007, 03:07 AM
Side Effects of This Medicine: Try this URL ...

Towards the bottom of the page ...

http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/500647.html



A dangerous 'beta' state drug ... stick with Neurontin.

Joe[/quote]

dejerine
02-06-2007, 04:34 AM
Joe, thanks for the Lyrica link.

One side effect listed there I can honestly say I am completely free from. It is "false or unusual sense of well-being". I guess that means the doctor asks how you are doing, knowing you are totally wasted, and you answer "Fine thank you".

This is the first time I knew Lyrica could do this. If there is one thing I have not had it is a false sense of well being, or for that matter a true sense of well being either. The burning dysesthesia has more than spared me from this side effect. Thank goodness for that.

firesmurf
02-06-2007, 10:22 AM
yea that "well being" thing missed me too D.this IS a freaky drug tho,i actually had kidney swelling with this stuff and double vision that went up and down,not the normal side to side stuff?? i see now they are doing studies on the effects this has on creatinine and also the opthamologic effects of this med.go figure.it also made me feel like i had just consumd a six pack.one thing i DID find out tho was that my robaxin i have been taking for years and years,most definitely heightened the gait issues and the eye problems.about an hour after i would take the robaxin,these effects got like five times worse than they had been.just an FYI.

i am now stopping trying any brand new meds since this problem happened and i also had a horrid response to cymbalta when IT first came out.i am sticking with the meds that have been around a while.this stuff really scared me.but i have to say it DID have a positive effect on my pain that nothing else seemed to want to touch.that of course sucks.marcia

Tim C.
02-06-2007, 06:43 PM
Lyrica:
My pain management MD, aka "pharmaceutical co send my family on vacation if I write so many scripts of a drug having zero efficacy on my patient"

Advising that my Baclofin was the cause of my listfulness,
Neurontin was there to the rescue.
Then came Gabapentin. Replacing the old Neurontin, Gabapentin became synonymous with Neurontin.
"Only 50% of Gabapentin actually digested, which is why the tablets had to be so large", I was told. So I was all too happy to switch, and try out the new Lyrica. I was told it was more effective and likely relieve my neuropathic pain. I can't attest to Gabapentin ever doing anything for me, yet I was kinda afraid of experiencing even more pain if I stopped.
I start out at 50mg, 3x/day, for the first month.
Results were zip. I stick it out for the month.
Next 30 days, 100mg dose: results nada.
Next 30 days, 150mg dose: results nada.
Next 30 days, 200mg dose, max dosage 600mg/day. I could have predicted that it would not be helpful, only it had unwanted side effect; blurry vision, headaches, etc.
Now I'm on a down dosage; back to 100mg for 30 days.
Maybe after 2 - 3 mos of down dosages.
All told, 6 to 7 mos of Lyrica, ~630 tablets.

Sonic_GB
02-08-2007, 04:12 PM
Hello All,

This is my first post. I just registered. I was switched from 3600mg/day of Gabapentin to Lyrica. I have worked my way up to 600mg/day of Lyrica, because below that I don't get much relief.

The problem is that at that high dosage of Lyrica, I get weird "shocks" or twitches, which realy affect my speech. I lose the ability to say a word in the middle of a sentence until the "shock" passes. My left hand twitches as well, which is interesting because my injury is a severly compressed and damaged ulnar nerve. This is a serious side effect as far as I'm concerned. Has anyone else seen this?

Also, how does one get a referral to a pain clinic? I don't think my regular doc is very good at treating chronic pain.

Thanks

Graham

David Berg
02-10-2007, 01:51 AM
Sonic, I'm not familiar enough with Lyrica to say much about your specific side-effects but I will say that just like with a lot of other drugs the worst of them should subside somewhat within a couple of weeks. If you can handle it that long, you might want to see how it goes and realize it *may* improve.

firesmurf
02-10-2007, 10:03 AM
Hi sonic,and welcome,sorry for what you are having to deal with,i think alot of us can relate.is your compression treatable,or surgically able to be 'freed"?what exactly does your 'normal' pain usually feel like(before the lyrica was added?)i am assuming this is in the forearm wrist,hand area or am i wrong?just wondering since the ulnar can be compressed at the c spine level as well as anywhere along the nerve.if i remeber right,the median nerve is what is actually involved in carpal tunnel so this wouldn't be the case either?

lyrica just like many other anti siezure meds can cause a host of symptoms and side effects.i too had brain 'lags" where i would be sitting there talking to someone and not be able to come up with words,this also happened while typing.i felt extremely stupid on this med.

getting yourself to either a good hand surgeon for an eval or ask your primary or any other doc for a referral to a pain clinic,in most cases you do indeed need a referral from your doc even if your ins doesn't normally require it.its just a whole different world than any other type of referral to a specialist.but i see now, my pain clinic is now advertising on TV,so who knows at this point?things are a changin.

anytime that a med is really starting to hamper you to the point where it is forcing you to stop an activity or seriously effecting your life,well its actual needs in your daily life really need to be re evaluated.my side effects from lyrica were seriosly affecting me to the point where i was unable to actually "do' alot of my daily activities,and caused me to actually have some horrid nightmares too.the thing was i was actually getting good relief,but i just could not tolerate that level of side effects i was having,you have to weigh the good against the bad ya know?has anyone mentioned a possible release type surgery or is this some sort of a permanent injury?if you could actually release that nerve this may take care of the actual problem by itself.

what other meds are you currently on or have tried besides the neurontin?marcia

Wise Young
02-14-2007, 03:33 AM
NEW EMEA ANNOUNCEMENT OFFERS RELIEF TO THOSE WITH CENTRAL NEUROPATHIC PAIN
19-09-2006 15:37

LONDON, September 19 /PRNewswire/ -- This week, the EMEA announced approval of Lyrica(R) (pregabalin) for the treatment of central neuropathic pain. Central neuropathic pain results from damage to the central nervous system and is a chronic, debilitating and under-diagnosed condition that can have a significant impact on a person's daily quality of life[1].
Pregabalin, a treatment with analgesic and anticonvulsant properties, was licensed for the treatment of peripheral neuropathic pain (resulting from damage to the peripheral nervous system) in July 2004[2]. This new central neuropathic pain indication is the first of its kind specifically for this patient population and was approved based on a trial in spinal cord injury patients with central neuropathic pain.
In response to the news, Paul Smith, Executive Director of the Spinal Injuries Association added
"Neuropathic pain can be a major problem for spinal cord injured people as it can have significant impact on the quality of our lives. We welcome all new treatments that can help tackle the almost unbearable pain that many of our members face daily".
Disease overview - The pain, causes and treatment
- Pain experienced by those with central neuropathic pain is quite different to those with nociceptive pain (caused by injury to body tissues e.g. cut, bruise or broken limb). Neuropathic pain is often described as feeling like 'burning', 'shooting', 'stabbing' or 'electric shock-like' sensations[1]
- Many conditions can cause central neuropathic pain, including:
- Multiple sclerosis[3] - Stroke[4] - Spinal cord injury[5] - Brain/ spinal cancer[6]

- A pregabalin study - the largest clinical trial in patients experiencing central neuropathic pain due to spinal cord injury conducted to date - demonstrated that:
- Patients on pregabalin experienced a significant reduction in their pain compared to placebo - Pain relief was rapid (within 1 week) and was sustained throughout the 13 week trial[7]

References
1. Dworkin RH, Backonja M, Rowbotham MC et al. Advances in neuropathic pain: diagnosis, mechanisms, and treatment recommendations. Archives of Neurology. 2003;60:1524-1534
2. LYRICA Summary of Product Characteristics. Pfizer Ltd.
3. The MS Information Source Book. National MS Society. www.nationalmssociety.org (Accessed September 2006)
4. Stroke Association. Fact Sheet 'Pain After Stroke'. www.stroke.org.uk. (accessed September 2006)
5. Berg B. Central Pain Syndrome Alliance. Fact sheet 'Who gets central pain?'. www.centralpain.org. (accessed Aug 2006)
6. Farrar JT. Treating neuropathic pain and the neuropathic pain patient. www.myelitis.org/pain.htm. (accessed September 2006).
7. Clin J Pain 2002;18;350-4.Sidall PJ, Cousins MJ, Otte A et al. Pregabalin Safely and Efficaciously Treats Chronic Central Neuropathic Pain After Spinal Cord Injury. Poster presented at 24th Annual Scientific Meeting of the American Pain Society, March 30 - April 2 2005. Boston M.A.


http://www.itnews.it/risorse/EuroNews,Zj0xNDM2MzU1


Also

http://www.nlm.nih.gov/medlineplus/news/fullstory_41930.html
Shingles Drug Reduces Spinal Cord Injury Pain
Patients often have few options to ease their discomfort, experts note
Printer-friendly version Printer-friendly version

HealthDay

By Robert Preidt

Wednesday, November 29, 2006

WEDNESDAY, Nov. 29 (HealthDay News) -- The drug pregabalin may help ease the pain of patients afflicted with spinal cord injury, Australian researchers report.

Currently, pregabalin is used to treat two common types of nerve pain -- diabetic nerve pain and pain after shingles.

The 12-week study, reported in the Nov. 28 Neurology, included 137 adult spinal cord injury patients with nerve pain. Half of them received pregabalin, and the other half received a placebo.

At the end of the study, fewer than 16 percent of the patients taking pregabalin reported severe pain, compared to 43 percent of the patients taking the placebo.

Patients taking the drug also had fewer sleep and anxiety problems than those taking the placebo. More than half (57 percent) of patients taking the drug said they felt better overall, compared to just 21 percent of those in the placebo group.

This study received funding from Pfizer Inc., which makes pregabalin.

"The findings are promising, as spinal cord injury pain is a condition which generally responds poorly to currently available treatments," study author Philip J. Siddall, of the Royal North Shore Hospital in Sydney, said in a prepared statement.

About 40 percent of spinal cord injury patients suffer nerve pain. There are about 450,000 people in the United States with spinal cord injuries, and about 11,000 people suffer a spinal cord injury each year, according to the National Spinal Cord Injury Association.

HealthDay

justadildo
02-14-2007, 03:14 PM
well, day 6 and i'm up to 100 mgs x 3 a day......absolute stop of cold sweats and clamminess on right side that i've had since injury...25-50% reduction in pain..."mind" feels better too.....side effects? not sleeping as sound as i was and bowells still loose but nuthin else...i'm happy with results so far but still early to conclude "success"............

David Berg
02-14-2007, 05:58 PM
That's interesting Wise, I had no idea the EMEA was citing me and my article. This is the first time I've seen that press release. They got my first initial wrong (gotta love typos, LOL), but it's definitely my article.

firesmurf
02-15-2007, 07:50 AM
we always knew you were "special" David,Marcia

David Berg
02-15-2007, 08:59 AM
we always knew you were "special" David,Marcia

Gee, uh, thanks Marcia (I think). ;)

(contemplating using my moderator edit powers to reword her post :whistle: )

LBUSH49
02-19-2007, 10:37 PM
Since my DR. put me on Lyrica 150 MG #X's I"ve down to hardly ever taking Percocet and feeling a lot better than I was before , he told me I could take up to 600 MG a day but he wants to leave it incase I have to increase it later . LBUSH

taj2002
02-19-2007, 10:58 PM
My husband (C3-C4 ASIA A) is currently in a “15-week randomized, double-blind, placebo-controlled, parallel-group, multi-center trial of pregabalin for the treatment of chronic central neuropathic pain after spinal cord injury.” In fact, according to the investigator, he is the first person that was enrolled in the trial. He is currently at visit 3 which is like 3 weeks on the drug. I know that many SCI patients take pregabalin (Lyrica) right now, but it looks like Pfizer is trying to get FDA approval for SCI use. So far it is working pretty well for my husband. It has also drastically reduced his spasms.

Trish

amanda1
02-28-2007, 02:31 PM
I was wondering if any of ya'll taking Lyrica has had any rashes develop after starting the medicine. My boyfriend T12-L1 incomplete has been on 50mg once daily and now taking twice daily has developed a rash/bumps. It is not everywhere and he loves how the medicine is helping him. We are not sure if it is something totally not related to the medicine or if it is related. Also, I read a few pages of this thread and some of you have more energy after taking Lyrica. He is more sleepy than anything. So, if anyone has any input about the rash please respond.

Amanda

metronycguy
02-28-2007, 10:06 PM
i think susan m did =rash

justadildo
02-28-2007, 10:21 PM
no rash but a little looser stool (thank you colostomy) and slight headache every a.m. but goes away as soon as i get up....3 weeks in, feel 10x better...150mgs 3x a day.....however, i seem to have worse nicotine cravings..anyone else?

alan
03-01-2007, 09:58 PM
No rash that I've noticed, but occasional zits on my thighs. Also no pain relief - they still keep intensifying. My upper back is killing me - seems like it gets harder to move my arms every day because my back feels so tight and the bones feel like they stick out so far. I can't stand this crap!

justadildo
03-02-2007, 12:15 AM
i didn't mean to imply my pain was gone, its not...prob reduced by 20-30%...but just that reduction makes me feel 10x better....after i re-read my reply i realized it looked like my pain was gone, just wanted to clarify :)

LSW
03-09-2007, 01:47 AM
I was recently put on a trial of 75mg of Lyrica with the plan that if it worked I'd up it to 150m. I am having serious problems with Lyrica and wished I had researched it more first. Please, please really consider if you want to trade one problem for another. I will admit, it helped my pain a lot, but it's not worth it to not be able to focus, concentrate, am exhausted all the time, headaches are killers. The nightmares and long dreams are horrible. I feel an impending doom, it's weird. I forget everything now. It's only been 1 month and my family notices as well as I do. I'll stop talking midsentence and not even know what I was doing/saying. I am going to see how I can wean off it, not looking forward to that process. I just want my life back. I do have the fluid retention, can't make a fist, etc. Finally, I probably won't be able to return to this forum, as I found this while googling "lyrica withdrawal". I wish you all the best.

metronycguy
03-09-2007, 01:57 AM
lsw it is not that big a deal.
most of us have had a lot of trauma and been through a lot.
a little lyrica barely phases us, it is probably one of the most problem free medications pain relief vrs side effects.
most of us have been on huge doses of neurontin.

michtif
03-16-2007, 12:06 PM
Does anyone feel like taking Lyrica made the pain/ burning worse? I feel like since I started on the 150my twice a day, the burning at my injury site has gotten worse. Actually there is burning where there never used to be. To the touch it always hurts, but not for no reason. Anyone? tiff

David Berg
03-16-2007, 06:05 PM
Does anyone feel like taking Lyrica made the pain/ burning worse? I feel like since I started on the 150my twice a day, the burning at my injury site has gotten worse. Actually there is burning where there never used to be. To the touch it always hurts, but not for no reason. Anyone? tiff
Tiff, talk to your doctor right away about this symptom. I'm not sure about Lyrica, but I know with Neurontin one of the rare side-effects can be increased neuro pain. I think there can be a couple of reasons behind this, but it should be addressed with your doctor ASAP.

Myc0
03-16-2007, 06:19 PM
Geez, my old doctor just moved to the heart of the axis of evil(Texas), so I'm trying to find a new doctor. I got a reccomendation for the guy who is taking most of his old patients, and my neuro pain is steadily getting worse, so I went to see him. I told him that my neuropathic pain was getting worse and I wanted to look into my options for treatment. I told him that I didn't want to take any more medications than absolutely necessary, and that I was concerned about any side effects. So he went and grabbed me a bag of Lyrica samples, told me that is was safe and not to worry about side-effects, and then rushed off. So I came here and started reading about peoples experiences with Lyrica. What I have read has lead me to two conclusions. One, I am throwing away the Lyrica samples and pursuing more natural, alternatives. And two, I will not be going back to that jackass doctor.

metronycguy
03-16-2007, 06:28 PM
myco , of you have serious neuropathic pain, there are not any more natural alternatives.
lyrica is really worth a shot , you may not have any adverse reactions to it.
most of used are pretty desperate, we wish the lyrica would solve the pain problem.
i would rather be on lyrica then big dose of narcotics

Myc0
03-16-2007, 06:46 PM
Metron: There may not be and legal natural alternatives, at least not in this state, but they do exist. Lyrica has so many side effects that sound extremely unpleasant, like the bowel aggravation, depression, dependancy, and many others. I have been on narcotic pain killers, and they are addictive and don't help much, so I would like to ditch them too. But that would mean having access to the evil marihuana, the weed with roots in hell & the assassin of youth! *cue dramatic music. My neuropathic pain isn't extreme, though it is getting steadily worse. I will do my best to examine my alternatives, but if it becomes constant and excruciating I will reluctantly try pharmacuticals if I have no other options.

metronycguy
03-16-2007, 07:32 PM
i am all for mj if it works for you. i try it every once in a while, my problem is i really dont know prople who smoke, so i cant get it when i need it. i dont think the last stuff i tried was really any good, i don think lyrica has dependency issue, i have been on 3200 a day of neurontin and came off no problem, never heard of lyrica causing depression, chronic pain will cause depression.
it is a crap hoot are the side effects better or worse than the pain? if your pain is transient and not 24/7 it may not be a good option.
i too wish i wasnt taking it..but i had to rause my dose to 300, taking 100 mg of oxycodone in 6 hours without good pain relief is not good either, and i did pull out the old mj stash from a year ago and trued that too!

naynay21
03-17-2007, 05:13 PM
I was recently put on a trial of 75mg of Lyrica with the plan that if it worked I'd up it to 150m. I am having serious problems with Lyrica and wished I had researched it more first. Please, please really consider if you want to trade one problem for another. I will admit, it helped my pain a lot, but it's not worth it to not be able to focus, concentrate, am exhausted all the time, headaches are killers. The nightmares and long dreams are horrible. I feel an impending doom, it's weird. I forget everything now. It's only been 1 month and my family notices as well as I do. I'll stop talking midsentence and not even know what I was doing/saying. I am going to see how I can wean off it, not looking forward to that process. I just want my life back. I do have the fluid retention, can't make a fist, etc. Finally, I probably won't be able to return to this forum, as I found this while googling "lyrica withdrawal". I wish you all the best.
I started Lyrica about16 months ago. It helped my pain a lot also. But I did not research right away-in fact not until I tried getting off and had these bizarre symtoms (listed already by others-all of them)I don't get tired but energy as I've read elsewhere. How much due to minimizing pain-I don't know. Headaches-yes. This area is hazy becuz I suffered from severe migraines a few years ago but have since had under control with diet and exercise. But as I'm finding out more-I think they started back again a few months after starting the Lyrica.
Also-the memory thing. Getting worse. Like you said-in the middle of mid sentence or I'll go into a room and forget why and maybe do this back and forth for like 20 mins before i remember.
Dr. ,in my experience, will not admitt to these horrific withdrawal symtoms. Why should they? It's Pzeir's new shining star. Look how long it took to finally get the md's to admit and accept this about antidepressants. And they still won't call it "withdrawals".
There's so much more I wanted to say. But,I am in the throes of withdrawal now. Very hard to concentrate. Not by choice. I have no money for the script-abrupt withdrawal from 350 mg a day. This happened at the beginning of Jan -I thought then-I'd rather be dead. The anxiety is thru the roof-my heart actually hurts from attacks. Thought about going to ER-they're not going to listen. Maybe on the guise of bad migraine but that won't help the anxiety.
My family is out of town, I'm living alone and phone has been shut off. I'm scared. Real scared.
If anybody thinking of triing-PLEASE DO YOU RESEARCH. Please attempt at all costs not to go off cold turkey.

metronycguy
03-17-2007, 05:48 PM
your never supposed to stop any of the anti convalescents cols turkey, your always supposed to taper off.
i think it is kind of weird that these 1 post members come here to knock lyrica as this evil drug, i doubt they have sci.
i think people with sci have been through so much that the side effects from lyrica are minor compared to the pain and other lovely bonuses they have.
i don't love lyrica but i would prefer trying lyrica rather than all the much stronger doses of narcotics i would need.
i stopped lyrica last year without any problem, i did taper off.
lyrica may not work for some people but i think it is worth a try. i am on 300 a day now, i dont like the tireness at all, but have to take tiredness over pain. the pain has to be stronger than ultram every 4 hour and 10mg oxycontin very 8 hours for me to try neurontin

firesmurf
03-18-2007, 08:21 AM
everyone will respond differently to just about every drug,it's your bodies individual physiological and metabolic make up,along with other medical problems and any other meds you may be taking.there are just alot of seperate things that will have some sort of an effect on how we respond.i had alot of problems with mainly my eyes and legs with lyrica,but others here and on other forums that i haunt have had no problems at all.lyrica actually did work for me but my overall quality of life just went down the tubes.ya can't do too much when your vision is double,but up and down,not side to side like "normal" double vision?wierd.

i had a big increase in my central pain(increased burning and stabs) with cymbalta.don't have a clue why but it affected many different body systems for me,and created or enhanced some sort of RLS component in my legs,it was hidious, and i had to go off like with a very quick taper.but other people report no problems.its just very highly individual.despite what it did to me,i would still reccomend lyrica to other people as it DID really help bring down both my RSDand CP intensity levels,i just wasn't willing to trade any good quality of life i still had left for it with some really nasty side effects that i had experienced with it.marcia

sheryljane
07-09-2007, 05:02 PM
:thinking: I am very interested in hearing from anyone who was on Lyrica for several months and was able to successfully cease taking it. I am on
150 mg, 3 x day. The side effects have been well described by many in the Care Cure Community who have written about this drug. I have attempted to cut back slowly but the pain comes galloping back and I start taking it again. Is there an acceptable alternative to this medication? Thanks! Sheryl;)

David Berg
07-10-2007, 03:00 PM
I know some people titrate off Neurontin while starting Lyrica, so I suppose you could talk to the doc about trying this in the other direction.

metronycguy
07-10-2007, 03:42 PM
i have lowered down to 150 day the last week, pain seems to increase though . sucks.

metronycguy
07-10-2007, 03:48 PM
you know your question and my responce just woke me up!
i just realized i didn't drop to 150mg a day i dropped to 100 a day from 300mg a day, and it was 4 days ago i made the switch. maybe that explains why i have been so out of sorts for the last couple days.
i was so used to taking 150 mg 2 x a day, that when i got the new script for 50 mg capsules i just continued taking 1 capsule twice day

alan
07-10-2007, 04:03 PM
Lyrica made my teeth and gums hurt again (I gave it another shot - desperation is a real motivator), so I had to taper off. It again did nothing for any pains I already had - just added new ones, which are gone again with the Lyrica stopped.

Tim C.
07-14-2007, 06:39 PM
done it- zero impact on pain = sucks

firesmurf
07-15-2007, 09:30 AM
Sheryl,i would highly recommend speaking with your PM about possibly tapering off the lyrica WHILE,like Dave said,tapering ONTO something else.this really does make the transistion a bit smoother.if there is any other anti S med that you have wanted to try,you could do it this way.at least you are actually going onto something else while going off the lyrica.it would possibly provide you at least enough coverage for your pain while getting off of it.this worked well for me anyways.it just lessens the overall impact and you are not left with 'nothing' for the neuro hell.i wish you luck with the WDs.it was a bit ugly for me but no where near how bad the side effects were while i was taking it on a daily basis,yikies!Marcia

metronycguy
07-15-2007, 10:39 AM
i tapered down to 150, so far so good. the side effects on my B&B with lyrica are intolerable, i tried ultram ER too again, bit i felt it made me too unmotivated. i also notice with ultram, the side effect of urge to pee is constant in me,
i have pee sensation which is good, but with ultram i seem to always have to pee, when i was cathing full time, i remember cathing like every 2 hours sometimes and only getting 250 out?
i hate to increase my Oxycontin dose, it is actually very low, 10 mg 3 times a day . fortunately the last couple days i have been managing the pain well, at night is when i have to use high breakthrough doses , but then the insomnia is extreme

NConcern
10-11-2007, 01:03 AM
I have been on Lyrica 200 mg per day since early this year. I have gained 35 pounds. I didn't realize thats what was causing the weight gain so once I realized that was the reason I just stopped taking it "cold turkey". NOT A GOOD IDEA!!! I should have known better and realized it a couple of days later, with TERRIBLE symptoms. I went 5 days without any and I was MISERABLE. I then spoke with my family doctor about weening off the Lyrica, thinking if I do that I won't have these symptoms, WRONG again! He started me back on 150 mg per day for a week, 2nd week 100 mg per day, 3rd week 50 mg 1 per day. I am now on week two and the withdrawals are killing me. I have nasuea, severe headaches, diarehha, insomnia, aches and pains in different parts of my body, feel feverish, vommitting some, confusion, depression, increased anxiety. It seems to be worsening. I go back to the doctor tomorrow to see what my next step is... I hope this is over soon! :confused:

Stars- in- the-sky
11-09-2007, 08:49 PM
I was on Lyrica for a while and it did nothing for me. I still had the pain so I just stopped taking it all together.

Tresa
01-30-2008, 11:45 PM
I live in MN, I have fibro...went to MAPS pain clinic, that was the worst experience ever. The dr did not listen, did not care and was just looking to make money. I believe they have some sort of a deal with Lyrica because when I asked for other treatment options I was told there aren't any. I am overweight and have edema...not a good drug for someone with those problems. I went to my primary who was appaled and finally offered to treat me herself. She offered me topamax which I took 1 1/2 hours ago and I am praying for relief. I called the pain clinic and asked why that was not offered and I could not get an answer. I know how things work and this dr must have some sort of deal with the Lyrica rep

foxyladi14
02-13-2008, 08:44 PM
dr. put me on lyrica two weeks ago.i had terribe painin my left hand the pinky and ring finger it works for me fine no side effects low dose75 twice a day.also doing supplaments
glucamine sulfate and tumerick curcuman
my problem is old age and arthritis in my back
if any one can suggest any thing else would sure be gtateful

Lee555
02-16-2008, 07:37 PM
I was taking Lyrica recently, started really low dose25 mg a day for 3 days, and worked up to 75 mg. The doctor was testing to see if there were side affects. Well nothing at 75, but when he put it up to 200 mg per day, I got reeling dizziness. So bad I had to wait 3 hours at home before I could drive to work. Even tried 100 mg at night and 6 hours later when I woke up I was still dizzy. I was able to drive but the next 100 mg dose took 5 hours to get normal again. After five days doing like this, my BP bottomed out, pulse dropped, and then the kicker to stop it was a rare side affect of atrial fibrillation. I have been taking beta blockers for a little while now to deal with tachycardia, so the atrial fib was a bad omen.

Megn
02-20-2008, 12:19 AM
Hi:) I am new , this being my first post. I was just started on Lyrica by my PM doc. This is my first day so nothing major to report yet except all day I have felt like I am walking about 3 feet off the ground...LOL..Also some dizziness and got sleepy and had to take a nap earlier today. I am to try it for a week at 150 mg/day and then let them know how I am. I have been reading and my worst side effect fear is weight gain. I am 5"2" and already weigh 148 pounds. I can NOT afford to gain anymore weight!!! So, have decided I will give it a try though and watch carefully and if weight gain starts I am off off the stuff!! I weigh as much as I do now mostly because of some of the meds I have tried. Elavil put 17 pounds on me in one week!!! I was a mess.

Anyhow, I will let you know how I do on the Lyrica. I also presently take low dose percocet and Zanaflex for pain. It usuallu makes it tolerable but it is never completely gone. Boy!! If we who suffer with chronic pain could just be as lucky as hitting the lottery that might take some of the frustration away but then probably not for long!!!
Will keep in touch.
Thanks,
Megn

Megn
02-20-2008, 01:02 AM
Hi LB:)
I am new here but just am wondering if you have experienced any weight gain being on the Lyrica? I am going over posts and have read a couple of yours. I have just started taking it and THAT is my worst fear because I cannot afford to gain more weight???

Hope to hear back from you.
Thanks in advance,
Megn

foxyladi14
02-25-2008, 12:54 PM
hi megan ive been on lyrica from arthritis pain for
over amonth and have lost a pound
and no pain or side efects
thank god :applaud:

foxyladi14
03-26-2008, 06:26 PM
everyone

foxyladi14
03-26-2008, 06:28 PM
everyone is different what cures one may kill another but for this old lady lyrica is a miracle

Rudy
03-31-2008, 12:42 AM
I have been on Lyrica for about 6mos to 1 yr, and have gained 60 LBs..... it seems to work great with the methadone but I am going to stop taking it because I cant handle being this fat...........

Rudy

bigbossman26
04-05-2008, 04:45 PM
I too have long suffered most if not all side effects of Lyrica that most of you have posted. From the groggy, sleepy, all around miserable feelings. I also have encountered the speech problems, feelings of being lost, cold sweats, jittery and clumsy. I was started on Lyrica some time ago taking only one 75 mg one time daily, and have now worked up to taking 150 mg 2 X daily. WOW what an interesting drug. Has it helped with the pain I am in with a two year old back injury; well I guess so. Has taken the pain level down a few notches but the side effects are beginning to wear me down a lot! I also take a few others so I just naturally thought it was the combo of taking these pills all day long. So I started playing around with timing of taking the Lyrica and the others but still suffer the same effects. So the long a short of it is Lyrica = good (as long as you can stand the side effects) Does the good outweigh the bad..... so for now I will continue and hope that these symptoms disappear or at least diminish as time marches on.....:zombie: :( :thinking: :confused: :zzz: LOL all of these is how I feel most days.... Oh yeah and the nicotine cravings unreal!! before Lyrica a pack would last me 2-3 days and now I smoke over a pack a day. At $10.00 a pack up here in Saskatchewan Canada, I'm goin broke very fast!!! Thanks for letting me vent...:D

carolad
06-18-2008, 01:43 PM
This drug is horrible!! Just try and go off. I tried to go off cold turkey after 3 months and then to taper off over 3 weeks from 100mg to 25mg and boy did the headaches start, all day everyday!!!
The ironic thing is my dr. gave me this drug for migraines!
Looking for a new alternative!

angel77
06-19-2008, 12:44 AM
I am a little confused. I am not "flying around" on Lyrica (wish I was!), but not real sleepy (only on it at night though). I am only on 75 mg. at night, but notice some increase in appetite, like late night cravings. Maybe not from the Lyrica? I am also on Topamax, but a low dose and just started on Cymbalta. We may adjust the doses on Cymbalta and Topamax. If Lyrica is going to "pack on the pounds", forget it. I just lost weight.
I am also taking Tylenol 3 for pain (but only use it when I must) and Robaxin (a muscle relaxant). They help control the pain somewhat. I guess there is no cure-all for pain. Any suggestions or comments? Thanks.

angelfirern
06-19-2008, 05:10 AM
i have been on lyrica almost a year now & i am sure glad that i did b/c it really has helped me tremendously. i did keep telling my doctor about taking lyrica & neurontin at the same time but he just didnt seem to be paying attention to me about the side effect i was having(blurry vision) so i have an eye doctor's appt the first week of july to see if there is anything going on. i was actually able to wear sandals for the first time in 3 yrs without going into spasms of pain, swelling & that horrible nerve pain that makes me feel like i am always having to run to the bathroom along with being up all night & being in severe pain.

sbern24
07-24-2008, 05:12 PM
Hi everyone,

I began taking Lyrica one week ago. I was previously diagnosed with Interstitial Cystitis but my current doctor believes I have nerve damage in my bladder. So far I have experienced minimal, if any, side effects, and no relief of pain. I keep seeing these stories posted about people who experience relief after a day or even a few hours, and then others from people who take the drug for an extended period without results.

Is there a middle ground with respect to how long it takes this drug to work? Should I be asking my doctor for something new if I don't feel better in a week? (this is the 7th or 8th drug I've been on in 6 months)

Geoffrey
07-31-2008, 07:09 PM
Three years ago yesterday I had a few screws and a couple of rods put in. I gained 8 screws - I guess to balance out the few screws I lost - ok bad joke. Any way I started in the hospital with 400 mg of Gabapentin over the last two years I have gone up to 3100mg and then back down to 2700 mg a day. I am still in pain so the doc put me on Lyrica 75 mg in the middle of the day. For me it is somewhat like T3's gives me a bit of a buzz.
I am thinking about increasing the Lyrica and dropping some of the Gabs. Thoughts?

GBO

janjam2
07-31-2008, 10:14 PM
[quote=sbern24]Hi everyone,

I began taking Lyrica one week ago. I was previously diagnosed with Interstitial Cystitis but my current doctor believes I have nerve damage in my bladder. So far I have experienced minimal, if any, side effects, and no relief of pain. I keep seeing these stories posted about people who experience relief after a day or even a few hours, and then others from people who take the drug for an extended period without results.

Is there a middle ground with respect to how long it takes this drug to work? Should I be asking my doctor for something new if I don't feel better in a week? (this is the 7th or 8th drug I've been on in 6 months)

OMG, I'm so sorry to hear about your pain!

First of all, I wanted to ask you if you were put on Lyrica strictly for the bladder issues, were you? I do know that everyone reacts to medications in different ways. Some pain meds work for some, while not at all for others. We may all have some sort of spinal anomaly, but each of those is different in one way or another too!

Having said that, if you were given Lyrica for pain that's like Interstitial Cystitis I would give Lyrica a try for a month (at least a couple of weeks if you can absolutely stand it) before totally cashing it in as a loss. My pain doctor told me that a month wouldn't be out of the ordinary to give a drug a fighting chance.

I DO UNDERSTAND HOW PAINFUL IT CAN BE. I imagine it doesn't make much difference whether its nerve damage or IC, YIKES, it freaking hurts.

I was just diagnosed with Interstitial Cystitis myself about a week and a half ago. I too am looking for some, any kind of magic bullet to get rid of this constant pain. My heart goes out to you. I can't stand to even try to get out of my recliner/bed any more. If I lay just exactly right I can get the pain to go down to a dull roar, but if I even move I get such severe sharp bladder pains that it actually makes me very weak. I can't trust myself to get out of bed because I get so weak from the pain. And the AD that this Interstitial Cystitis brings on is the worst I've had in 23 years of this whole mess. I managed to make it in to see my Urologist after a grueling 1 hour car ride on Tuesday, and I didn't come home with ANY NEW ANSWERS. :mad: :confused:

I shared my personal issues with you in order to tell you what I've been through because I have been taking Lyrica 150mg four times a day for over two years, and I've only developed this IC crap over the last several months. I guess what I'm trying to say is that for me, Lyrica IS NOT helping bladder matters at all!

I also take Neurontin 600mg, 4 times a day, and Nortriptyline 10 mg, four times a day too. I also take Zanaflex 4 mg 4 times a day, and I just upped my Ditropan from 5 mg twice a day to 10 mg three times a day.

Then there's the pain meds.

My doctor just upped Methadone from 5 mg four times a day, to 10 mg three times a day, and if I am judicious about taking it on a strict schedule along with the other pain meds as I will describe them below it does seem to take that horrible sharp IC pain away on a constant basis. I seem to be able to handle what's left of the pain that way. I still get that very, very weak feeling if I try to motivate around, but at least I'm not crying out in pain with just about every breath as I was up until earlier this week.

I have a Baclofen pump too! What someone really needs to invent is a type of muscle relaxant for the pump that's safe and effective for smooth muscle spasms and pain such as in the bladder. I can just see the line forming of all of us SCI's to get that med in our pumps faster than anything! lol!

The one thing my Pain doctor taught me to do with Norco and Dilaudid that does seem to help with all kinds of bad nerve pain, like central and Arachnoiditis pain, is to take 10 mg Norco with my methadone when I get up in the morning along with the what seems like an entire drug store of crap. If 2 hours later the Methadone and the Norco don't cut the pain, then he told me to take 4 mg of Dilaudid at that 2 hour mark to handle the breakthrough pain. It usually helps quite a bit. If I can get a grip on the pain, then I just wait 2 hours after the Dilaudid and take another Norco. I keep that up all day long sometimes for four or five days in a row. Of course after you try that for a few days then it seems like you're a zombie. My pain doctor was kind enough to prescribe Provigil 200mg, twice a day so that I can spend the day with my eyes open and my mind not in a big time fog. My insurance company denied coverage for Provigil more than once a day, but my Pain doctor wrote them a letter that explained the amount of drugs it can take to survive central pain, and other nerve pain and they relented. I have to be re-authorized every six months now by letter in order to receive the twice a day Provigil, but it has made my life just that little bit more normal again. Whatever the Hell normal is anyway!

I have read about studies that have been done, and even one with urodynamic testing before and after the trial to prove that intravesical use of heparin can help with IC, and urgency problems. I can't recall if there were any other bladder problems that were studied, but what I read did sound promising. Just another thought for you! Just Google Intravesical therapy for IC and these studies will pop up for you if you're interested.

I do really wish there was some GOOD answer to pain and bladder and bowel problems with SCI, but there isn't!

I do remember to take my Methadone three times a day because that DOES seem to be the icing on the cake that manages to dull some of these awful pains. And as much as I hate, hate, hate the Ditropan, since I upped it to the 10 mg three times a day it also seems to have contributed to some pain relief. In twenty-three years with SCI problems and complications, I can't EVER REMEMBER FEELING THIS BAD! I know for me the trouble with the Interstitial Cystitis starting when I was forced to start using a Foley catheter again after 21 years of freedom from it and using intermittent cathing instead. Do you use a Foley? Just curious!

I know I haven't been able to give you the magic bullet I know you're looking for. I know I sure am looking for one, but I hope that explaining what I've been able to come up with to find at least some relief could perhaps help you too! Why not ask your new doctor if there's a combination of drugs that you can try to find at least some relief. Personally for me, I was so desperate that I actually asked my Urologist if he would consider just remove my catheter permanently. It was a crazy thing to ask for (and he didn't fail to tell me that either). I wasn't really serious, but at that moment I was in so much pain that comment just slipped right out of my mouth!

I know how you feel when you're at the end of your rope and there's no pain relief in sight! I tell myself all the time that it could always be worse. LOL! I just don't want to have to find out what worse would be.

I hope you feel better fast! Good Luck!:)

janjam2

fishin'guy
08-08-2008, 09:34 AM
Provigil-- my gawd, my rheumatologist gave me some of those for tiredness( was takeing the drugstore of pills too), holy crapoly He said to start out with just a half, and none in the PM. Took half 9 AM, didn't sleep for 36 hrs. WOW talk about speed that doesn't feel like speed. It's pretty smooth stuff, smooth but potent. Good luck

metronycguy
08-09-2008, 06:33 AM
i tried provigil about 5 years ago when i waqs on high level of neurontin, 3200 a day, it seemed to work for a while then no longer worked qas well.
maybe the meds over rode ot.
i dtsrted adderal acouple moths ago, it made a hufe difference in quality of life.
my lyrica dose is now 300mg a day minimal, plus a patridge in a pear tree type medicines.

smokymtn memories
08-09-2008, 05:46 PM
My doctor wanted to try Lyrica, I did, it worked better than Gabapentin. I've gained weight with the Gabapentin and my hands, feet, and ankles tend to swell, a lot.

The results with trying the Lyrica were better, but, I can't afford it and don't qualify for any help.

So, I've been reading about the good results with Topamax, and all the weight Brokenwing lost changing to it, so I called the pharmacy. Cost is as high as the Lyrica and no generic.

I go back, again, to the clinic on Wednesday. If I were the family dog, I'd put me down.................

metronycguy
08-10-2008, 02:46 PM
one thing i noticed weird with lyrica,
is the time that urine is produced.
i would cat before bed and 3 hours later need to cath again , with about 400ml produces. i have sensation, so i get the feeling to pee, at 400 it can trigger it especially if trying to get back to sleep. i dont know if this is the lyrica or just the water retention in legs from reclining. i never had to cath before in 3 hours after laying down to sleep.

fishin'guy
08-10-2008, 03:10 PM
Hey smokey, if you contact the mfg directly, sometimes the will give pills, or sell at much reduced rate.
Metro, I've been on lyrica since b4 my cauda eq. and swelling is a prob w/ me too. A couple of my other drugs do also tho, so I never know which is doin it when.
As far as cathing, yup I get the sensation about 3-4 hrs into sleep at night, but not during the day, some days I've gone 6-7 hrs, and cath just 400-500.