AnonymousJanuary 23, 2010 at 4:33 am
I rarely get excited about drugs since I can’t take many of them without side effects – BUT – I’m kind of excited about this drug Ampyra that the FDA just approved for MS and here is why:
(from the manufacturer’s website)
[I]AMPYRA is an extended release tablet formulation of the investigational drug fampridine (4-aminopyridine or 4-AP). Extended release fampridine tablets act by blocking the potassium channels in demyelinated nerves, which reduces the leakage of current from the axons, restoring neuronal conduction, and action potential formation.[/I]
And here is the story that made me so excited:
Gosh it sure would be great to have the strength to walk around Disney World like this lady wouldn’t it? 😀 At any rate I think I will give it a little time and then start bugging my doctor about trying it out. 🙂
AnonymousJanuary 23, 2010 at 9:11 pm
WOW! This is a really promising avenue! Thanks for the info! I just sent it to a friend who was diagnosed with MS last year. If you are able to have your doctor prescribe it to you, please keep us posted on any results/side effects. I am seeing my neuro on Tuesday and am going to ask him about it too! This is great info! Thanks again:D
AnonymousJanuary 25, 2010 at 11:40 am
MS attacks the central nervous system, CIDP attacks the peripheral nervous system, but both destroy or at least damage the nerves. If this drug can arrest the destruction of nerves for patients with MS, I don’t know why it couldn’t at least be tried by those with CIDP. I know it wouldn’t work for me, because the damage I have as residuals is due to destroyed nerves, but for most of you here on the Forum?
AnonymousJanuary 25, 2010 at 4:16 pm
I have been very interested in the ressearch on several compounds being tested in MS patients due to my feeling that there is enoug commonality between MS and CIDP (both of which involve inflammation and demyelinization) to make it likely that success in treating one could lead to success in treating the other.
I have spoken to several neurologists about the possibility that compounds which reduce inflammation and/or demyelinization in MS patients could do the same in CIDP patients. The answer from each one has been that they don’t see why not; a couple even said that it’s a good possibility. I have yet to hear of any studies involving CIDP patients, unfortunately, but I keep suggesting it.
Sometimes pharmaceutical companies will make their products available to patients on a compassionate use basis. Maybe if enough neuros and patients start asking questions, that could happen for us.
Has anyone got a neuro who might be willing to give it a try?
AnonymousJanuary 25, 2010 at 7:11 pm
I was reading that there are two other multiple sclerosis oral drugs (claudribine and fingolimod) that just passed Phase III trials and showed to have helped by 50% of improvement of mobility issues etc. in the trials and are now awaiting FDA approval expected to come later on this year.
Good to see all the advancement in using tablets as the new MS medications and not having to use injections much longer as that would be great if we could have oral meds for us and not IVIG in the future hopefully 🙂 .
AnonymousMay 12, 2010 at 8:37 am
I know the pharmaceutical industry has few friends on this forum, so please don’t shoot me when I say I work in it. I’m a very, very minor cog in the machine, but I have tried to make the most of opportunities to speak to decision-makers about the possibility of doing research in CIDP with MS drugs (like Novartis’ fingolimod, sanofi-aventis’ teriflunomide and nerispirdine, and others listed in this article from 2009: [url]http://pubs.acs.org/cen/coverstory/87/8714cover.html)[/url].
If I’m understanding what the people I’ve spoken to have been saying correctly, there are a number of reasons why big pharma hesitates to do research in CIDP. One is, of course, return on investment. Even a small study costs a lot of money, and we CIDP sufferers are not a very big group. But the bigger problem is that ANY adverse event (in other words anything we think of as a side effect, even a headache or stomach ache) that occurs during a study of a drug in ANY population must be reported when the company files for approval. So if the CIDP population doesn’t tolerate the drug well, that could mess up the possibility of getting the drug approved for anyone, even patients with other illnesses who DO tolerate the drug well. And that’s a risk most companies would not be willing to take.
The good news is that many big pharma companies ARE more than willing to donate medicinal products to doctors for independent research in smaller populations (especially once the drug has been approved). So our best bet is in lobbying the doctors and foundations who study CIDP to plan studies using these MS drugs.
This group is not the only one we can lobby. There are organizations that study myelin, or inflammatory proceses, or who specialize in research on orphan diseases. Google them! Write to them. Ask your neurologist to think about doing a small study. Let’s work together to generate some interest in discovering whether drugs that work on inflammation and demyelination in the CNS also work on those issues in the PNS.
AnonymousMay 12, 2010 at 9:29 am
I don’t believe the drug company is saying that this drug can ONLY be used for MS; like the company that is looking for input from people on this board, [B][I]they are simply marketing to the largest demographic[/I][/B].
Who knows…maybe the interviews currently being held are for a future marketing campaign for THIS drug, but to a different demographic. Possible?
AnonymousMay 12, 2010 at 8:50 pm
Many new drugs tend to improve unexpected illnesses symptoms and end up being used off labels. The drug company might find something good for more than the MS group—like us CIDP folks.
My neuro runs several drug trials for MS so I’ll more than hint when I see him him next.
I know most trials try to follow strict protocol and any side effects are reported. I’d endure some if the drug helped. I surely have with IVIG.
October 14, 2010 at 10:50 pm
My neoro is looking into me trying this for my cidp–she needs to speak with the drug company to see how it will react to my type of cidp. My immune sysyem makes ant-bodies to potassium and this medication blocks potassium channels———-so she needs to do a little research to make sure it wont make things worse, will keep you posted : ) Lori
October 15, 2010 at 2:58 pm
been up all night–(thanks to my ivig headache–lol) researching this medication. It really does sound promising and pretty minimal side effects. The worst being seizures–so may want to consider this if seizure prone?? Other than that the side effects were the ones listed for most any medication. Of coarse as with any new medication–a lot of side effects aren’t noticed until years later when lots of people have been taking it.. but hey–the good with ther bad–im willing to try it if my dr finds out its ok with the type of potassium antibodies that are causing my cidp.
It is sustained released, does not have to be taken with food, taken twice per day and starts working quickly–with max serum levels taking only 3-4 days. If anyone has started it it would be great for some info : ) does anyone else on here have antibodies to potassium? Does anyone know if people with MS have antibodies to potassium?? Lori
AnonymousNovember 2, 2010 at 8:20 pm
I have CIDP and have been on Amprya for the past 3 months. It helps me tremendously. I’m very glad my doctor is so supportive of trying anything that might help me because he hit a home run with this one. You have to be careful to really take this med 12 hours apart, so I occasionally miss a dose and can tell the difference quickly. I now wear a watch with the alarms set for 6 am and 6 pm. Press your doctor to try – you’ll know in 30 days (or less) if it makes a difference.
November 2, 2010 at 8:48 pm
It is funny that I just saw this posting because my Doc said “since you are going to the US for 12 days, see if you can get AMPYRA, because I think it could help your CIDP”.
Yesterday I arrived in Santa Clara just to spend 7 hours at he hospital. I’m feeling so weak. I had GBS in 2006, then diagnosed with CIDP 3 months later. But something happened in the last seven days, because I feel like when I had G BS, only not as much weaker. The doc that saw me at Santa Clara Valley Medical Center yesterday told me it could be a “flash” of GBS…Anyway, I’m watching it; can hardly walk.
How could I buy AMPYRA in the US? I’m not a resident, don’t have a social Security number.
AnonymousNovember 3, 2010 at 11:06 pm
You don’t have to be a resident. Just get a Rx for it from your Dr. here and pay cash for it, unless your out of country (not sure where you are from) has a medication plan that is covered if filled in the US.
You can’t buy the medication without a doctor’s Rx, but if you have been hospitalized here for symptoms, I would think a Dr would write one for you.
Worth a try.
AnonymousNovember 4, 2010 at 8:10 am
Not sure how much it would cost you … but my neuro told me it currently runs $1,300/month. Since I receive IVIG every week, I hit my max out of pocket ($5,000) early each year, so right now I pay nothing. However, I’ve been told my co-pay will be $65/month.
But jdunk is correct, you must get a prescription first.
November 4, 2010 at 1:40 pm
Linda–was curious as to what your mobility was before starting ampyra and how much did it improve after, I too asked about trying it–my neurologist called the ampyra drug co, after talking with them she said I shouldn’t try it because of the type of cidp that i have. Mine is caused from a paraneoplastic disorder of potassium antibodies and apparantly ampyra works by doing something to the potassium channel?? It seemed to me that would be more reason for it TO work–but im not a dr and do not know as much about the ion channels as she does. Glad that it is working for you:) Lori
AnonymousNovember 5, 2010 at 12:02 am
My neuro went to a symposium on Ampyra and got very excited about the possibility of it’s potential for CIDP patients. So when I started having trouble with walking he prescribed it for me. I used to go dancing several times a week and with the CIPD – well, no more dancing. But I think because my legs were so strong, I’ve been able to maintain walking. However, about 6 months ago, the pain in my feet became almost unbearable and walking a real challenge. I started using crutches. I couldn’t do my own grocery shopping/errands because after 5 min at the store, my feet hurt so bad I could hardly breathe! Now, while I still have pain in my feet, it isn’t as brutal. I believe the ampyra is helping to soothe my nerves, allowing better function. I can do small grocery runs and get around without the crutches. I still have a lot of pain at the end of the day (it’s not for pain, afterall) and have to elevate my feet off the end of my bed as I can’t stand anything touching them. But I really I was headed for a wheel chair and now I’m not even using a cane.
Sorry this was so long – but didn’t know how else to explain it.
November 6, 2010 at 10:56 pm
Hi Linda–yes that was helpful. I do not have any pain–just numbness in my feet. I can walk without any aids–but not in a normal gait due to weakness in feet, ankles and calves. I do think the ivig is working –just very SLOOOOWlY:(
cannot run, ski etc and horrible balance, I was just curious as to exactly what the ampyra does–does it help with the gait–strength?? Exactly what it made easier in walking?? IF it works by “calming the nerves” then maybe it makes the signal from the brain to the feet work better?? ive researched the sites on it– but they really dont explain the mechanics of the drug–or at least not in laymans terms. maybe once it is around and used more we will get more info on it. If you stop taking it will you go back to how you were prior? from what ive read it does not have any “healing” qualities–just sort of treats symptoms. Thanks for sharing your experience with it–very interesting : ) Lori
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