Our experiences with Oxycontin...

[SurfCat]

I've been taking oxycontin for about 2 1/2 years and have never since that time spoken with another person about their experiences with the drug (such as dosages, how many hours relief, how many months does one dosage work for, side effects etc.).

I experience fairly severe burning and shooting pain in my lower body, especially my butt and thighs. When I first returned home I was able to keep it under control with minimal vicadin. After realizing this was eating up my stomach I switched oxycontinand was first prescribed 20 mg/2xper day. I was amazed at how well this worked for me and angry that no doctor had mentioned it before year 3 of SCI! Since that time (roughly three years) I have been forced to increase to about 50 mg/2x per day. I don't even know if that's a lot in the scheme of spinal cord injury pain or not!?

My problem is the short length of time I actually get relief from one of those little guys: about 2 really good hours, and 2 so-so hours. I don't know how they can call them 12 Hour time release? Because of this I have to use of breakthrough dose about halfway through my day, just to make it to the next dumb pill. For this extra push I usually use 20 mg of Norco.

My other problem with oxycontin are the mood swings it gives me. I generally don't feel drugged like a lot of people, but instead get a 45 minute or so real energy boost. This is pretty much the best I feel all-day. But towards the end of the DOSE I just start to feel negative about everything,just like a gray has come over everything I'm thinking and looking at. Some days it's worse than others.

As far as pain control, a good dosewill sometimes bring me from an 8 to a 5 on a scale of 10. But this fluctuates quite a bit throughout the hours in between doses. I take my first pill about 9 a.m. and the second around 4 p.m. and so at nightime I'm pretty much on my own.

Overall I hate having pain and having to live on painkillers, but on the other side of things I would pretty much be screwed without OC. I'm having to wEIGHthe benefits and costright now because of the horrible problems I'm having with my stomach. The question is, or almost six years of taking pain medication killing my stomach and will the symptoms dissipate if I go through the hell of getting off the meds.

I'd love to hear your experiences and opinions if you have the time.

I was totally anti-peer support for a longtime, thinking I can do this one on my own, but the road is too long, too rough, and too lonely for a man to traverse alone.

GOD BLESS

[betheny]

I havent tried OC except for a week after my accident. I've been on hydrocodone for survival over 2 yrs. I'm off it now-10 days, 12 hrs. If you decide to withdraw from the OC, be careful. The 1st time I kicked the Lorcet I think I nearly died. I fear hospitals, they don't understand SCI, so I wouldn't let my husband take me to the hospital. In retrospect, a poor decision. I was laying there, sick, jonesing my butt off. It's indescribable. It was 2 days before I figured out that the reason I occasionally banged against the wall was seizures!I don't know what I'll do now. My GP got mad at me because I rejected his general surgeon recommendation for a specialist w/ a recent rectal problem. Hence, no pain meds. Actually, the pain is better than it was a year ago. Have only really needed opiates 3 or 4 days of the 10. Unfortunately, I had none. My family has an unbelievable pattern of substance abuse, so if the pills are there, I take them to feel better. Lack of control. This post probably isn't helping you at all-sorry. It is a lonely road, though, ain't it? Wish I could help-Betheny

[Sci Mom]

Hi Surfcat...

My daughter is a T11/12 and has been on oxycontin for about 3 years or so. She's trying to wean off the stuff, with some success. Her chair doesn't fit her at all, and she's getting a new one in January. She has high hopes that a better seat will help with her pain levels, and that she'll be able to cut way back.

As to dosage: about a year after her accident [car], she was in ANOTHER car accident which didn't help matters at all. At her highest, she was taking 100mg three times a day, and functioning quite well. Scary, huh? She's cut that in half now..but she does take it 3x a day. She can tell when she's taking more than she needs because she just can't stay awake..that's how she's been cutting back. I don't notice dramatic mood swings with her, fortunately. She could be experiencing that, but if so, it's not noticable from my standpoint.

Best of luck...and hey, there's no need to go it alone...not really.

Vicky

[~Patrick~]

Hey Surfcat, I was on OC for a few months, don't remember dose. They put me on Lorcet and Neurontin and weened me of OC. The neurontin is no way oc but it does make the burning tolerable most days.

...act like a survivor not a victim.

[bschiner]

I take 20 mg. of oxycotin 3 times a day which helps with the pain in my upper back but in no ways completely releives it.I found that if i take more i am to tired work out.i also takeoxycodone when the pain is real bad
brian

[SurfCat]

Thank you everyone for your replies. It seems that most of you take oxycontin three times a day instead of twice, which really explains why I go so up-and-down throughout the day. How do you get your doctor to prescribe a 12 hour time release medicine for three times a day?

Bethany, how is the fight to stay off pain meds going?

God Bless...

[betheny]

Well, it's sucking less, thanks for asking. I find after 3 weeks that I only am in dire pain every 3rd day or so. I'm going to have to have something for that 4th day. Now if I can keep it around and only take it when I'm at pain level 7 or so...Wish me luck! Betheny

[SurfCat]

Thanks for the update Betheny. Why did you decide you needed to go off pain meds? Have you had many withdrawal symptoms? May God bless you with his peace as you keep fighting.

For everyone else, what are the worst side effects you experience from oxycontin? For me: it feels like its tearing up my stomach, and seems to alter my mood throughout the dosage (in good ways and bad).

Patrick

[SurfCat]

Thanks for all of your insights, I printed them and took them into my doctor said that he could see that most of you are taking oxycontin three times a day instead of the two times I was. I'm now taking it three times and getting better relief throughout the afternoon.

How often do you guys usually need to increase your dosage?

[alan]

100 mg Oxyycontin per day is not an overly large dose. Check some pain sites, newgroups, or mailing lists - some people take several hundred milligrams daily.

If it works for you, and you can tolerate any side effects, that's great. If you also need a short-acting opiate for breakthrough pain, ask your doctor.

[Stiggy]

Surfcat,may I ask you where you found these post where people with sci are taking oc 3 times a day.Thxs for the help..Stigg

[humptydumpty]

Surfcat,
I don't usually reply to anything, for I only have a webtv and can't "see" what I am writing, so I usually just read. I will see if this gets through to you? I originally was started on OC (20mgxevry12hrs), about 3 years ago. About 6 months later, I went to 40mg, same dosing. I kept telling my Doc that at about 7-8hrs, I began to feel a big increase in pain levels and had this incredible urge to yawn. I know this sounds rediculous, but I couldn't stop yawning and my eyes would water as though I was crying. I have since learned that OC is dispensed into the system within the first few hours, and since it is, by the 4th hr you are at peak blood levels. therefore, by the 12th hour, you don't have any opiate left, so what was happening was, I was going into withdrawal by my 8th hour! Still, my Doc bumped me up to 60mg every 12hr. I was on that dose for about a year, but was taking breakthroughs more often. That was supposed to be the idea for taking OC, so I didn't need the BT's! Finally, when he could see I was building a tolerance to the 60mg, he was willing to increase my dose to 80mg every12 hr. I asked why we didn't try taking the 40mg every 8 hr, and he agreed, since I would be taking the same amt. in a 24hr period, instead of increasing. That was the success for me! I was on that dose for I think about 6months, until this past month, we increased to 60mg every 8hr. This keeps the breakthroughs down to a mimimum. I don't like to take drugs either, but I guess for me, it is far better than other options I have considered. I don't have any problems with feeling high...wish for once that would happen...no side-effects at all.
Hope this helps and you are having less pain these days.
Dumpty

[NervePain]

I havn't taken Oxycontin personnaly, however I do have 22 yrs. experience with Pain associated with SCI. I hate to say this but it sounds like your mood swings are probably due to your body wanting more medication, I do assume your still taking your meds. per your perscription, and are not yet self-medicating. You are probably becoming addicated to them, thus the mood swings,which will get worse over time.

Are you having your liver check annually? Or how do you know there eating-up your stomach. I have been told that Codiene would eat up my liver, but it must take 30 or 40 years because I been taking Codiene for 20+ yrs, and I do have my liver checked annually to be safe; and so far my liver is just fine (last checked 12/02.

As for the pain, Take The Pain Killers, do not allow your self to suffer.

I am a two-time recovering CODIENE Addict, this is my second time I have quit taking Pain Meds. The first time I quit for 1 yr, which I just suffed the pain, so I know suffing isn't the right thing to do.

Be honest with your physician, and If your current one isn't listening or trying to help find alternatives, FIND ONE THAT WILL.

After 22 years I think I have finally found one thats trying alternatives.

[Stiggy]

Today my Doctor gave me oxycodone 5mg tabs one every 4-6hrs..At first he gave me 40mg of oxycontin 3 times a day but my insurance would not pay for this drug but they would pay for oxycodone.I know they are the same drug but is oxycontin 40mg better then oxycodone 5mg because I dont seem to get much relief off of the 5mg.I need to take 2 tabs to get any pain relief and it only last a few hours!
Happy Trails Stiggy

[alan]

Oxycontin is better, because it is continuous release. Discuss MSContin or methadone with the doc..

[NervePain]

PLEASE only consider Methadone as the very last option, and only after you have tried everything and then tried everything again. Methadone is not something you want to consider lightly. It is a drug you may be on the rest of your life!

[alan]

If you need opiates to control your pain enough to give you a life, you'll be on that opiate for life, be it Oxycontin, MScontin, or methadone. Methadone is no better or worse than any of the other opiates, save that it requires a longer taper if/when you want to get off it. It's also the least expensive opiate available.

[Stiggy]

I need to ask a question about Oxycodone..Whats the difference between Oxycodone 5mg and Oxycontin 40mg.Is oxy 5mg for break through pain and oxy 40mg TR.Because oxy 5mg does not last long for pain. Thx..Happy Trails Stiggy

[alan]

Oxycontin - long acting time release oxycodone. Oxycodone plain - short acting. Use for breakthrough, or acute pain such as post-op.

[Tim C.]

i am a c/4-5, 8 mos post, been taking OCodone once the leg/buttocks burning, and general discomfort becomes unbearable each day. the most undesirable side effect seems to be constipation. this then leads to more pain, then no way to avoid OC the following day. anyone else have similar experience.<pre class="ip-ubbcode-code-pre"> </pre>

[Indiana Joe]

For some reason the PF brand name of OxyContin & MSContin seem to drop off after only 6 hours or so and more is needed, this I have seen more with OxyContin than any other med and a lot of people have to keep raising their dose, but you are not yet on a large dose.

I have taken MSContin since 99 and I can get the brand PF and I do a few times a year but I prefer the Endo ER morphine as it lasts a lot longer for me as I have been on 60 X 3 for 2 years now but in reality I could easily raise it by 50% but I choose not to.

PF advertises their med as a 12 hour med and some insurance companies use this to keep costs down and with the brand name of MSContin I feel the med wearing off quickly just as most Oxy users say they feel.

If you had an option to take smaller doses maybe an hour apart without raising your daily dose you may have better relief.

I dose with 2 doses earlier in the day when I am hurting after waking and before noon and I need no more until bedtime.

I hope I made sense I just woke up at 3am sleeping in my recliner and my neck bent so my pain is high.

Off to bed where I should have been hours ago.

Joey

[Stiggy]

Hey Joe,This new Docotr I have put me on Endo ER Morphine at first,Went to the pharmacy and pick up a scrpit and I thought to myself..its about time I got something for pain but there after I took a pill and I got a little stup,didnt feel good and became confused so I stoped taking it.Then he put me on oxycontin 40mg 3 times a day and it wears off after about 6hrs due to my intense rate of pain.Its funny because my insurance will pay for the morphine but not the oxycontin.So now Im back to square one! http://sci.rutgers.edu/forum/images/smilies/smile.gif)) Stiggy

[Shiningknight]

Hello everyone i destroyed my shoulder 2 years ago and since then i have been taking 4 20mg oxycontins and 10 perc's a day for the pain the medication has so many different affects on me some days i get drowsey others i am full of energy and vigor . But the one thing i have noticed is the pain never goes away completly and i refuse to ask for a higher dose from my doctor. She is a wonderfull person very careing and understanding and there is never an issue when it comes to aking for any kind of increase from her, i know that is a rare thing within the medical field so i feel for all you out there that have to lie,cheat,or beg and suffer for the one thing that keeps you sane and from jumping off a bridge because of the pain you have to suffer with. My life is a revolving cycle of pain and suffering and it scares the hell out of me that i am on this medication when i read about so many horror stories about the suffering of addictin and withdrawl i have read about. My heart and prayers go out to all you suffers out there crying at night when the pain takes ahold of you or when the overwhelming fear you get when you see that your pain med bottle empty or down to a few pills way before the next repeat date. Life is never fair for ones who suffer so much and have to deal with the devil of addiction to live in a place of heaven and peace . I will always wonder if the life i lead will be worth the price i will have to pay in the end God Bless You All!!