Ampyra Allergic Reaction

I took my first dose of ampyra today and after 7 hours I had a terrible reaction. I have bad neuropathic pain in my legs, and about 7 hours after the dose, I felt like the neuropathy had been kicked up about 100 times. I literally felt like my legs were on fire. I jumped in the pool and immediately called the neuro's office to report the problem. I was told to stop it immediately, which I am very disappointed about. I had an allergic reaction to Tysabri, couldn't take Rebif, have problems with high dose steroids, and now this. I am pretty much to the secondary progressive stage, although I had a massive attack 15 months ago, and am now on Copaxone and Avonex duo therapy since 2/09. I was really hoping Ampyra would help with the walking, (now on a walker) but because of all my allergies, the doc says to stop. Any thought, opinions are welcome. Thanks much and God Bless

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Wow, I am very sorry to read about what you are suffering through. It sounds like you have a double whammy with those medication allergies on top of your other medical condition.

No medication works for everyone, though some have gotten good results from Ampyra.

Has your doctor suggested anything else you can try?

https:/­/­rxchat.com/­wiki/­Ampyra/­

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I think we have had a similar Ampyra experience, unfortunately! Yours came on more quickly, but the increase in neuropathy pain is quite similar. Here's my story: I had some tingling in the left side of my face prior to starting Ampyra. Nothing really, but noticeable. After a few days on Ampyra, the tingling progressed to pain. I visited my dentist 3 times and had several x-rays which showed nothing (to the tune of $500). After about a full month on Ampyra, the pain has escalated to excruciating trigeminal neuralgia. Thank goodness for this web page, because I suspected that Ampyra could be contributing but I didn't want to believe it. My 'regular' MS symptoms are nothing in comparison to TGN. I hope stopping Ampyra will help as I want to do something besides pain meds. I'll go make the call now! If you have success with your plan to stop, please let us know!

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It appears to be an all or nothing type of medication. Some have gotten great results and some have gotten very bad ones from trying it.

There are a few other threads with details from those using it, I'll post the links for some of them.

http:/­/­www.PrescriptionDrug-Info.com/­threads/­Ampyra-and-balance-D77138.htm

http:/­/­www.PrescriptionDrug-Info.com/­threads/­After-2-months-neurologist-takes-me-off-Ampyra-D77328.htm

http:/­/­www.PrescriptionDrug-Info.com/­threads/­Ampyra-Warning-D77274.htm

We are very sorry to read about the pain that you are in.

Hopefully, things will improve after you have been off of it for awhile.

Please post back and let us know how you are doing.

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Thanks. I've spent the day reading and was fortunate to be home when my next bottle of Ampyra was delivered. I reread the Ampyra prescribing information and patient medication guide - yet again. Though I've read it many times I still failed to correlate the information warning of 'tingling or burning of skin or pain in throat' with my experience. It is not the right description for me.

However, I found this excerpt from the website drugs.com. (note the list of side effects is longer than this) The excerpt is worded differently than the patient medication guide from Acorda.

Stop taking Ampyra and call your doctor at once if you have a serious side effect such a
numbness, burning pain, or tingly feeling;

This is it. I had tingly feelings inside my face/mouth which escalated to the burning nerve pain. Keep the medication guide handy and refer back to it often as you take Ampyra - or any drug! And please keep reading these blogs; they helped me. Feel well. Thank you..... Source

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Thanks to the posters in this thread. I started Ampyra last night and had an immediate bad reaction: awake almost all night, mind racing uncontrollably, and my standard neuropathic pain became much more intense. I'm trying to decide whether to discontinue immediately or give it a few days... this discussion was helpful.

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My dear friend is starting Ampyra within the next day or two. I've asked her not to - or at least to be extremely careful and if there is ANY shooting pain to stop immediately. Your burning pain sounds similar.

I've met many people on Ampyra who have had no nerve pain - some have improved and some have not. I have been off Ampyra for 19 days (I took it for 6 weeks) and still have the pain. I really hope it subsides soon; it is unbearable. I hope all of your pain subsides quickly because you didn't stay on the drug for long. Does the pool help? I would think not - but I will do anything!!!

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I am 68 years old. I was a runner, and was 42 when I got my first MS symptom. It started out with R side top lip numbness. 4 hours later, R hand became numb. A week later, on a 3 mile run, my R. leg started dragging. Went to Neurologist, & diagnosed as: might be MS. 1 month later, symptoms gone, back to running. 10 years later, my LEFT eye went blind. 1 month later, I got 80% L eye sight back. After 10 years has passed, I started tripping and falling. Apparently, after 20 years has passed, Secondary Progressive kicks in. And it's been going downhill ever since.

At first, when I heard about Tysabri, every thing I had read about told me that it was Chemo-based. I watched my mother die using Chemo, blowing up like a balloon.

After 10 years, Betaseron comes out on the market: I got worse.Then, there was nothing to take but Prednisone, which I could not take. Then I was put on Avonex: getting worse: then Copaxone: after 3 years, got a hideous adverse reaction: getting worse; Then tried Clinical Study of Fampradine: then LDN: then Ampyra; (still taking) then added Gilenya: The fatigue became worse, the R leg dragged more, the spasms were crippling. Was taken off Gilenya. Takes 6 weeks to "wash-out" of Gilenya; now will start Tysabri August 15, 2011. I cannot get around without the used of my walker. I have 1 for the car (I can't drive anymore) 1 for downstairs and 1 for upstairs. I am able to drag myself up and down the stairs to get my chores done. Of course, it takes me all day, because I have to sit down every 2 minutes to ride out the spasms and fatigue. I also have a Recumbent Bike I use for almost an hour each day. I was using my Elliptical every day, but one day, a year and a half ago, my R leg refused to move. I couldn't get down from it. If it wasn't so pitiful, it would've been hilarious watching me trying to get myself off that machine! : ) Anyway, I just wanted to tell everyone thinking about trying to use Tysabri. I understand NOW that it is not chemo-based. I tested out NEG for PML antigen. So, if it's Neg, you cant take it; if it's Pos, you've got a year to try it; but from what I've learned from that is that the Fatigue comes back with a vengeance. I wish you all the very best of luck in taking anything that works for you. God Bless us all.

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I live in Poland. My doctor said Ampyra is a great chance to me. Unfortunately this drug is not available in my country. is anybody can sell ampyra to me. I have a friend in New York . He can be cotact with you. Please help me!

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A correction is in order about what I said about the blood results regarding being tested for having had the antigefor the JCV. I said that IF your test results were NEGATVE, you CAN"T take Tysabri. What I MEANT to say was: NEGATIVE results mean you CAN take Tysabri. IF you test POSITIVE that means you MAY take Tysabri for ONLY 1 year, before your Dr. pulls you off of Tysabri for safety's sake for developing PML. I apologize for posting this information wrongly. So, NEGATIVE = TAKE. POSITIVE = CAN"T TAKE. No wonder I was so confused!

On Monday, 8/15/2011, I received my FIRST Tysabri infusion. They told me that if there is NO reaction, this is GOOD. IF there IS a reaction, and this is possible, simply because EVERYONE reacts differently to any medication, the problem areas, if possible, can be treated. So, if I may say: please DON"T think that just because somebody else reacts to a particular med a certain way, doesn't necessarily mean that you will react to it in the same way. Everyone of us are individuals, reacting differently.

Then there are the symptoms we all get, which are all pretty much the very same. I have discovered, over the past 30 years, dealing with this filthy disease, that it's just the degree with which we all feel the deficit in our own bodies. for example, I have developed hideous muscle spasms on my weak right-side because, over the past 10 years, I am forced to swing my right leg around to the side in order to avoid tripping because I don't want to fall. As a result, my posture has suffered very badly. I'm all bent over now. As a result, I've made an appointment at the Shepherd Center with their PT center to get fitted with a Walk Aid, that will straighten out my gait, and, as a result, straiten out my posture at the same time. Incidently, I tried the first Walk Aid out 10 years ago, when it first came out. and I got shocked so badly, I nearly fell flat on my butt because nobody knew how to adjust them.

Now, they have a new and improved, battery-run cuff, with no electrical wires. Now they have this battery operated cuff that fits around the upper shin, just under the knee. I've called Shepherd Center to make an appointment to try this new method out one more time. I'll post again in mid September about the results of this experiment. By the way, my Insurance covers the Walk Aid. 10 years ago, they didn't.

My next Tysabri infusion is schedule on September 12, 2011. We'll see how we do by that time. I'm not really expecting any miracles here, but Hope runs eternal! : )

Love to you all and God Bless,

Caryle

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Dear cc, I was first introduced 5 years ago in a Clinical Study of Fampridine AP and it was on the Study for 3 years. It was designed to improve the gait. Since I was still walking okay then, I can honestly say that I didn't know if I had any negative or positive results or not. So
then, Amprya comes along, and it turns out to be Fampridine, only more effective. So, in the year and a half of taking Ampyra 10 mg twice a day, I have not felt any adverse reaction at all.
My Dr was going to start me on Gilenya, which was supposed to give you much more energy. For me, it did just the opposite. I hadn't felt so much dragging fatigue since I had first gotten this mess. I had taken it for 6 months. It took 6 weeks to "wash-out" of Gilenya so I could start on Tysabri Infusion. I tested out for the JCV NEGATIVE. So, I asked: "If your negative, you can take Tysabri and if your Positive, it means you carry the antigen for the JC virus? The answer was CORRECT.

I'm still taking taking Ampyra. My Dr thinks that taking it, along with Tysabri, it might have positive properties. Do I had my first infusion Monday, August 15,11, 4 days ago. Since I still have painful right leg spasms and R. knee collapsing out of the blue, I can say I haven't seen any adverse reaction against Tysabri.

Bear in mind that whenever I start walking around with my walker, the spasms start in again. When that happens, i sit down, wait for at least 3 hours has passed until I allow myself 1 Ibuprofen, which give me relief.
I was told that after the T infusion, I might have a headache. I may be getting a headache, but taking 1 Ibuprofen at least 3 to 4 hours between the spasms.
I am also taking Baclofen 10 mg during the day and 20mg at bedtime. Evert 2 to 4 hours my bladder wakes me up.
However, since my 1st infusion, I've gone up to 5 hours before getting out of bed, hoping to make to the bathroom. So, I would say that that is a plus.
I hope what I'm telling you all that it helps you decide. One other thing, Most of you are probably all a lot younger than me, but I'm told that the younger you are, the more positive the outcome of taking Tysabri. I gotten a lot of damage done to my brai iin the past 30 + years. God Bless you all.

So, who can say? But as of to date

I had my first infusion

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I was on Anonex for 2yrs because my insurance at the time would not cover Trysabri until I first tried Avonex. I was walking prior to Avonex now I use a walker and have excruciating knee pain. Now I'm on Trysabri 6th infusion this Monday and taking Ampyra. No changes yet. I think I now have arthitis in my knees. Very frustrating.

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Have you ever tried Betaseron? I was on this interferon for 4 years & never had any serious side effects but after 4 years my neuro had noticed a few new lessions on my brain that were now active and since been started on tysabri not long enuf tho to see any difference in my mri's because I have only been taking tysbri 4 months witch is a few months to early to tell. I would just like you to know Betaseron for was the safest choice before my MS progressed it was the best choice for me because it has the least & non serious side affects compared to other interferons Betaseron for me had absolutely no serious side affects at all with there thinnest self administered needle in MS history was just a no brainer for me

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I was on Betaseron 4 years before I was taken off only to start my neuro's new study on Tysabri but I do have almost 2 months left of Betaseron (interferon) witch has absolutely no serious side effect I experienced no side effects at all from this interferon. If you like please do some research on this very popular MS med. When you look it up you will find it is one of the more pricey meds for MS only because it has been around for almost 20 years and they bost the smallest needle in MS history. Yup that's all true check it out

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I have a couple bottles of Ampyra my mom had for her MS. She moved to a nursing home and they are unable to use her home meds. I don't know if anyone would be interested in it? She has not had any of the adverse side affects other people have listed. She has been on it since 2010 when it was FDA approved.

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