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Thread: Took 4-AP for the first time today

  1. #51
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by DreamersWillRide
    I too have questions about this drug.
    Some background information:
    My combination of Skelaxin, Dantrium, and Zanaflex was not helping with tone and spasticity + clonus (I am 6 years out C6 incomplete - had been taking these drugs for 4 yrs).
    I am Brown Sequard and have progressed to using a forearm crutch for short distances - before that, platform walker.
    My doctor agreed to try 4ap, and a non sustained release formula was compounded. The dosage over a month or so started at 5mg/day to 5mg 3x/day to 10mg 3x/day. It really seemed to help, actually it was great except for neuropathy which was addressed with an increase of Lyrica, and nervous/jittery which was addressed with prn Klonopin.
    Things were going well; walking with the crutch was a dream come true.
    On Monday of this week I took a 100 mg tablet of Trazadone to nap because I was worn out from a Saturday horse show - I was just watching, but it was 100 degrees out. After my nap, I woke up and was SHOCKED and SCARED because it was like my return had disappeared - literally my legs could not hold my weight, and my knees would buckle. Walking is terrible, it’s like my feet are too heavy to pick up and step, my balance shot.
    Does the functional return ever get worse like this? It's been a week. Also, my hands are shaking really badly, I drop everything. I’m just weak like never before and can’t function like I used to.
    I’m very worried; will I get my strength and balance back? How and why? Please help with any information.
    I've lose weight bearing and more when high heat hits or a high fever. I also lose some retained muscles when I take oxycodone. How often do you take Trazadone? I had a really bad time on my last cruise when we went through the Panama Canal. My fever went up from the heat and humidity from 97.1 to 101.4 in 2 hours. I did everything to cool myself down but even breathing was difficult for 2 days after.

    I ramped myself down a couple years ago from 4-AP and still retain a lot of my gains. The reason was I was diagnosed with IBS. I planned on waiting for the Acorda version.

    Has your neuropathy gotten worse since the 4-ap? If so how soon? Like my spasms seemed to be worse for a few weeks than that begin to improve. Maybe the Lyrica needs changed? I'm just thinking it's new so not many people may know how they react together.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  2. #52
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    Wise, thank you for your knowledge, transparency and patience with this site and undertaking the FDA process! As a T12 inc/Cauda Equina sometimes walking with crutches, I have a hunch fampridine could help me maximize & utilize the gains I've made. But I've been hesitant because of the risks and a lack of pharmaceutical presence & recognition. What are the last step in getting this approved & distributed, & then into Canada?

    Thanks again & good luck with Acorda,
    SS.

    PS. I especially enjoyed the comment about the cats.

    Quote Originally Posted by Wise Young
    In the 1980's, several neurologists used fampridine to treat people with MS. Andy Blight, while he was in my laboratory, was the first to try it on cats with chronic spinal cord injury. I still remember the cat looking down at its legs moving with a surprised expression on its face. If people don't have axons crossing the injury site, it should not have much effect on motor or sensory function. However, if they have some axons, it may increase sensory or motor function. It also seems to reduce spasticity and neuropathic pain in some people. In phase 2 trials, reduction in spasticity appeared to be the most consistent effect. Unfortunately, the phase 3 clinical trials to show this did not turn out to be positive.

    Acorda Therapeutics is developing Fampridine SR (sustained release) that allows higher doses of the drug with less side effects. Fampridine SR turned to be highly significant in increasing the ability of people with MS to walk. Specifically, it improved the timed 10-meter walk of people. One phase 3 trial showed this last year and the result of a second phase 3 trial will be reported in the next few weeks. If positive, this is likely to lead to FDA approval of fampridine SR. While the immediate release version of fampridine is available from compounding pharmacies and some even promote timed release versions of the drug, this will be the first validated source of the drug.

    The drug is not innocuous. Its effects and side-effects are dose-dependent. In overdoses, the drug can cause seizures. When people take the drug initially, it can cause paresthesias (abnormal tingling and other sensations), insomnia, and increased excitability. In very high doses, it can cause cardiac problems. For this reason, it is essential that the drug be taken under the supervision of an experienced physician and I am very concerned that some people are taking this drug on their own without taking the time or care to u understand the drug and what it does. Finally, I do want to disclose that I am a founder of Acorda Therapeutics, am on the Board of Directors, and own stock on the company.

    Wise.

  3. #53
    I stoped taking it. anytime I took more than 15mgs in a day I would get intensely dizzy with headaches. It also made my anxiety attacks worse. I did notice some sensation like cold air on my legs but i really wanted to get something like bowel or bladder. It wasn't worth the trouble so I stoped taking it although I may try it again sometime. never did get to the complete 30mg a day dosage either...

  4. #54
    Thank you Sue and Eric for your replies! It is so helpful to hear other people's experiences, and it makes me less anxious - thanks again! I am doing better today. I don't take Trazadone anymore; I used to, and had some leftover (not smart I know). I think the heat was a big factor, I was outside all day, and can't really tell/regulate my temperature (another idiot move too eh?). I am tapering up to 10mg4x/day, but yeah, the jitteriness (sp?) and other things make question whether the benefits outweigh the side effects; I sometimes get massive headaches too. The Lyrica helped tons with the neuropathy; I'll probably stick with that. If after this week the stuff, for lack of a better way to put it, is still going on, I'm going to see my doctor to re-assess what my options are + the cost at this dosage is getting on up there. I will probably opt to wait for the Acorda version too; I'll give the 10mg4x/day a few weeks and see if that makes a difference. Thank you tons again - I think I was hoping this drug would be life changing, shouldn't think of it like that; hope is one thing, expectation is another.

    PS When you stopped taking it, did you taper down, or just stop? What do you take instead? Baclofin (sp?) makes me wicked sick ugg.

  5. #55
    Quote Originally Posted by DreamersWillRide
    Thank you Sue and Eric for your replies! It is so helpful to hear other people's experiences, and it makes me less anxious - thanks again! I am doing better today. I don't take Trazadone anymore; I used to, and had some leftover (not smart I know). I think the heat was a big factor, I was outside all day, and can't really tell/regulate my temperature (another idiot move too eh?). I am tapering up to 10mg4x/day, but yeah, the jitteriness (sp?) and other things make question whether the benefits outweigh the side effects; I sometimes get massive headaches too. The Lyrica helped tons with the neuropathy; I'll probably stick with that. If after this week the stuff, for lack of a better way to put it, is still going on, I'm going to see my doctor to re-assess what my options are + the cost at this dosage is getting on up there. I will probably opt to wait for the Acorda version too; I'll give the 10mg4x/day a few weeks and see if that makes a difference. Thank you tons again - I think I was hoping this drug would be life changing, shouldn't think of it like that; hope is one thing, expectation is another.

    PS When you stopped taking it, did you taper down, or just stop? What do you take instead? Baclofin (sp?) makes me wicked sick ugg.

    Dreamers,

    People should taper down on 4-AP over a two week period. Many people who get off 4-AP report an increase in spasticity.

    Wise.

  6. #56
    Thank you Dr. Young - the experiences with this drug seem to vary quite a bit, and some doctors aren't familiar with it either; information from you is solid - and that of people on here is helpful too. I will follow your advice if I choose to stop taking it - thank you again!

    Jenifer

    PS sorry to talk so much, but I have another question: I really really don't want to go the Baclofin pump direction, but tone and spasticity are big problems for me - is their an alternative other than the usual suspects?

  7. #57
    Dr Young,I've just gotten 4-AP and are taking it.I am ramping it up slowly and are taking 4 times 5mg today. Yesterday, I notice I have a hard time sleeping, what can I do to address this situation? Is it ok for me to take sleeping aid for this?Thanks alway for your help.

  8. #58
    Yesterday, I start taking the first 10mg and get dizziness, tired. I notice that was one of the side effect. Today, I have food first before I take the medications, and the dizziness is much less. I just want to share the experience I have taken 4-AP so that others can benefit. I don't feel any thing different yet, sensory, function recovery etc... probably, I have to take the full dose ( 10mg, 4 times a day) before notice any improvements. Anyone has experiences in taking this med, please comment. Thanks.

  9. #59
    steve,

    The symptoms of insomnia and dizziness are common. That is why the ramping is necessary. You should stay at the lower does until those symptoms are gone before going to the next stage. They tend to go away after several days as your body accomodates to the dose. Please, please remember that you should ramp downward if you are planning to get off the drug. Don't get off the drug cold-turkey.

    I am very concerned that there are people who do not read very carefully and who are taking this drug without physician supervision. I have said repeatedly that people should not be taking this drug without physician supervision. For example, do you know that this drug may cause seizures, what seizures are like, and what to do if you get a seizure?

    Wise.

  10. #60
    Quote Originally Posted by DreamersWillRide
    Thank you Dr. Young - the experiences with this drug seem to vary quite a bit, and some doctors aren't familiar with it either; information from you is solid - and that of people on here is helpful too. I will follow your advice if I choose to stop taking it - thank you again!

    Jenifer

    PS sorry to talk so much, but I have another question: I really really don't want to go the Baclofin pump direction, but tone and spasticity are big problems for me - is their an alternative other than the usual suspects?
    Many people report that exercise and functional electrical stimulation will reduce tone or spasticity. I don't know what you mean by the "usual suspects". There is baclofen but oral doses are limited to 100-120 mg per day. Beyond that, you need to go to the pump. Tizanidine (Zanaflex) is often used on its own in in combination with baclofen.

    While 4-aminopyridine has been reported to reduce spasticity in some people, this was not sufficiently consistent to be demonstrable in two phase 3 clinical trials that Acorda Therapeutics carried out in 2002-2003. There are several other drugs that have been used for spasticity but I don't believe that they are more effective and they may be addictive and have more side-effects, i.e. valium (and other benzodiazepines such as clonezapam). An old drug called dantrolene use to be popular before baclofen.

    None of the above drugs are particularly useful against spasms, i.e. spontaneous movements of the legs or movement of the legs in response to small stimuli. It appears that gabapentin (Neurontin) significantly reduces spasms. I think that some of other anti-epileptics may also have similar effects. Unfortunately, there have been few studies of these drugs on spasms.

    Wise.

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