This Is MS Multiple Sclerosis Community: Knowledge & Support

Anyone know of any long-term side effects from 4-AP? Does the body eventually build up a tolerance to it so it's not as effective. I have been taking one tablet/day (can take up to three) for about a year. Just recently took two and found that my stamina improved significantly. (Haven't tried the three in one day.) I have PPMS, use a cane and have an AFO. With the improvement in stamina, comes the improvement in confidence which is a huge plus. I'm not a big pill taker, so I'm interested to know if anyone has had, or knows of, any bad side effects with this drug.

Hi Cleo...
I am not sure how current this info is , but as you are now taking this substance, I will assume it has been cleared for human consumption even though it is a poison, one would also assume if someone is taking this , their potassium levels should be monitored on a very regular basis and the dosage amount also monitored closely.

4-Aminopyridine

http://www.mult-sclerosis.org/4aminopyridine.html

4-aminopyridine (also known as 4-AP and Fampridine) is a drug that blocks the potassium channels in neurons. This effectively improves the transmission of nerve impulses down damaged axons. It does not replace damaged myelin but users of 4-aminopyridine report dramatic improvement in a number of symptoms especially paraesthesia. It should be born in mind that this is an experimental drug and the side-effects are uncertain. Dosages should be carefully regulated as potassium is a chemical that is used extensively in other parts of the body including heart functions.

Agriculturally, 4-AP is used as an extremely effective bird poison sold under the brand name Avitrol. It is highly toxic to all mammals including humans if dosages are exceeded, and, as an experimental drug, recommended dose data is unavailable.

A slow release formulation of 4-aminopyridine is supplied by the Irish drug company, Elan Corporation, and is currently being tested by Acorda in two phase II trials in the US. It is currently awaiting authorization by the US Federal Drug Agency (FDA).

Philip

Cleo,

Are you taking this drug outside of a clinical trial?

Deb

EDIT: Philip........great minds think alike.

Ok....my gut feeling was right on again.

I did an FDA search (among a couple other things). This drug, called Fampridine-SR has not been approved by the FDA yet, nor do I find an application for approval yet.

This is currently still in clinical trials by the company Acorda Therapeutics.

Legally speaking, I give no specific comment or recommendations on this. Cleo, please consult with your doctor regarding any questions you may have.

I quote from Acorda's website:

"Acorda Therapeutics is currently conducting clinical trials of its lead product, Fampridine-SR, in both chronic spinal cord injury (SCI) and multiple sclerosis (MS).

Fampridine Clinical History

Approximately 550 people have been treated with Fampridine-SR in 14 clinical trials, including eight clinical trials for SCI and six clinical trials for MS. Patients in SCI trials have shown improvements in a variety of impaired functions, including decreased muscle spasticity, improved bowel or bladder control, or increased sexual function. Participants in MS studies demonstrated improved walking ability and lower leg strength.

In earlier clinical trials, at clinically anticipated doses, Fampridine-SR was well tolerated and side effects were most often reported as being mild-to-moderate comparable to placebo. Side effects included numbness, tingling, headache, insomnia, dizziness, anxiety and nausea. Seizure has been reported in a small number of patients, in most instances at higher doses than we are currently evaluating. As Fampridine-SR is an experimental drug, safety and efficacy have not been fully determined.

Acorda is currently conducting two Phase 3 clinical trials of Fampridine-SR in chronic SCI as well as a Phase 2 clinical trial in MS."

Best of everything to you, Cleo! Keep us posted on how you are doing. Don't be a stranger!

Deb

This drug was prescribed by my neurologist who is head of the Maxine Messinger Multiple Sclerosis Clinic at Baylor College of Medicine here in Houston, Texas. I am not part of a clinical trial.

I fully understand the importance of potassium in your body and did not know it was affected by this drug. (My most fervent belief is that you learn more from other MS patients than you will ever learn from your neurologist, or any other doctor for that matter!) All of you have raised some very interesting points, as usual. I will talk to my neurologist, do some additonal research and let you know the outcome.

Without question, this Forum is visited by some ff the most knowledgeable and articulate people I have ever been involved with. Thanks for your time and the information you provided.

Thank you for your time and concern.

Thanks, Cleo!! I'm sorry we couldn't be of more help to you.

As I said before, please don't be a stranger!!

All the best!!

Deb

This made me smile, and gives me an opportunity to say "thank you" to all of you who come here and share your knowledge. We are proud to be a platform for this kind of vital information exchange-- that was the vision for the site, and it is a thrill to see it come to fruition.

1043 members and counting... how fast can we get to 2000???

now back to your regularly scheduled programing...

Hi Cleo,

Several months ago I tried 4-aminopyridine at the dose that my research found: 5mg 3 times a day. My neurologist was willing and prescribed it for me. I am SPMS.

I did use it three times a day in the hopes of better nerve transmission. About four days into the treatment, my usual leg dysthesia worsened. I suspected that somehow already faulty messages were now being really well transmitted. The sensation of very painful tingling ran throughout my legs. Ou-uch! I stopped the 4-aminopyridine immediately and within a day or two, my abnormal sensations returned to usual and tolerable levels.

I was disappointed in the results but it never occured to me to try again at a lower dose. (I so hated the sensations that I wrote "bird poison" on the bottle and turned it upside down in the medicine cabinet.)

I'm also taking 2400 mg neurontin, 2500 mg Keppra, and 4.5 mg LDN. And Copaxone for its so-called neuroprotective capacity if nothing else.

But I'd be interested in doing the guinea pig thing again if that seems reasonable at a lower dose. Do you have dysthesias or parathesias, Cleo?

For the most part, the neurontin helps my dysthesia and Keppra is terrific for spasticity. And, maybe the LDN helps- I can tell very easily when my endorphin levels are higher. The LDN seems to suppress mine for 8-10 hours after ingestion, so I take mine earlier in the evening then is usually recommended.

So any input? Others' experience? Was the increase in dysthesias a fluke? Tingling is listed as a side effect even though a decrease in parathesias is supposed to be a benefit.

My compounding pharmacist was sympathetic but had no real other information.

Vicki

Hi VickiG, thanks for your post and please visit often and let us all know how things are going..

Philip

VickiG, I have not experience parathesias or dysthesias. I have had PPMS for 16 years. I am still ambulatory but do use a cane and AFO. About 10 years ago, my neuro prescribed 4-AP. I, too, did not like the way it made me feel tingly inside, so I quit taking it. It was about a year ago that I ask my neuro about it again. I am on 5mg and usually take it once a day in the morning. One day I took two about two hours apart. Not only did I notice I was stronger, but my husband did, too. I am still staying with one a day unless I really need the additional stamina.

I did take neurotin for about a week and couldn't tolerate the tingling it produced. I have not tried it again. I did not feel stronger on the neurotin.

I do find it so interesting that not only does everyone's body react so differently to MS, but also their bodies react so differently to the different drugs that are around. I take LDN with no negative side effects, but also no positive side effects. Yet, I have read many stories of people who were much better after taking LDN.

Since there are no answers for this disease, all I can say is keep trying the things that make sense to you. Some will work, some won't, but none of us can afford to give up. I am a firm believer that you do whatever is necessary to keep yourself as normal as possible. After 16 years, I have learned that the world around you reacts to you based on how you react to yourself. It is true that you can either have MS or it can have you. Good luck!

I haven't had time to contact my neuro to ask about the downside of 4-AP but will try to do so today and let everyone know what he says.