Ampyra Question

[toriartist]

I've been on Ampyra since November 2016. I am also on Aubagio. I have RRMS and thankfully, other than episodes, I am fairly functionally and hope to stay that way as long as this 62 year old body allows.

I was shocked by the quick turnaround in my body once I started Ampyra. For years, I have been unsteady, had trouble walking, and was stuck driving a van because I had trouble/pain even getting into a Kia Soul. So by December of 2016, I was helping to chop ice on our gravel driveway, walking with a lot less issue or pain and was able to lease a Kia Forte since I could get in and out of it with no pain or discomfort. It was an amazing Christmas gift to my body! My neurologist was thrilled.

Then by June of 2017, the Ampyra was not working as well. I made a 50-75% degradation from the progression I had made in December. I even asked the doctor if he could increase the dosage. Nope, can't. Bad enough having to go through a specialty pharmacy, but to lose effectiveness??

As my UPMC rep explained, that is the cold time of the year (ah, no fooling!), so it worked better because it was cool and dry. Yeah, it's been hot here. AC is cranking everywhere and cool towels are used, especially when cooking. I can't afford a cooling vest.

I'm very overweight, so I thought it was due to that, but I doubt that since it worked well when I started taking it. Anyone have any suggestions? I'm having an episode now with pain and walking, and as good as my chiropractor is, I feel I am fighting a losing fight.

[mdok]

toriartist- I have been on Ampyra for several years. It has helped with the speed that I walk, the PAat my neurologist, said that if my walking speed slows, they will not be able to renew my script for it. I started Aubagio, a month before you did. Aubagio has helped improve my functioning overall. My Neuro commented on this after I had been on it for 1 month. I wish I had some answers for you. Is your functioning on Ampyra right now better than your situation before you started it? You might monitor how you are doing i on it for a while. See if you improve more when it gets cooler. It might just be less now because it is hotter. I know I have slightly worsening of function when it gets hotter, even before I was on either of these meds.

[BillD999]

toriartist I have been taking Ampyra since it first became available, a number of years. I know it helps me function - it seems to improve nerve response in the parts of my body most affected. The benefit is small but it is significant, I have experimented with stopping it & I always go back to it. Everyone does not get the same benefit, but I have never heard that it was affected by weather. My MS however, now that is affected by the weather. Cool & dry suits me much better. It might seem odd that I live in FL, but in fact for at least half the year central FL is quite pleasant. And I haven't had to shovel one bit of snow since I have been here.

Ampyra will have no effect whatever on the progression of your MS, and it's entirely possible that you built up a tolerance.

[erash]

toriartist glad to meet you and interesting to hear about your experiences with Ampyra. Because I had febrile seizures as an infant, they won't let me try it. I'm wondering if it's progression of symptoms related to heat as well as simply MS progression?

There is also something in pharmacology known as tachyphylaxis where Receptors become less responsive to a drug over time. This can happen with chronic use of a lot of drugs, even antihistamines like Claritin. The fix is often to go off the drug for 2 weeks, allow the receptors to reset, and then resume the drug.

I have no idea if that could be what's happening but you may want to ask the specialty pharmacist.

Let us know how it goes. Best wishes 💐

[Joalyn]

My husband tried it for about a month. Initially, like you, he saw improvement, but then it tapered off to back where he was originally.

[mrsmike]

@ toriartist hi sorry to hear about your regression. I have been on ampyra since Dec 2013. I only expected it to help lift my foot and that is exactly what it does, nothing more, nothing less. What it did for you is great. Maybe the heat does have something to do with it. As we all know MS is different with everyone. I hope you start to feel better. Thoughts and prayers are with you.

[Jbahnan]

Hello toriartist , I have been on AMPYRA since oct 2014 and it has really helped me especially with fatigue, this medication is the best out of the 3 medictions i have taken for my MS. GOOD LUCK in the future!!!

[rjoneslaw]

@toriartist

I am sorry to hear what's going on with you.

As for the cooling vest the MSAA has a program that gives them free. You can go to polarproducts.com site to see them and they have a link to the MS website so you can go ther and get them.

As for me I have not had any side effects since taking ampyra. I also take tecfidera.

I hope this helps.

[CherieMSCN]

toriartist MSAA and the mSF both have programs where cooling products are available to you at little or no cost. MSF's program only runs from February to June each year. I got by for a few years by wrapping frozen packs in bandanas and tying them around my neck or wrists. Some of the injectable meds come with small cooling packs that can be frozen and used as bra inserts which help me considerably in dealing with heat. Consuming non-sugared iced beverages also helps to keep cool internally. I heard once from an MS Neurologist that if our core temp rises even as little as a quarter of a degree (fahrenheit) many of us with MS can see a surge in heat related symptoms (sometimes referred to as Uhthoff's sign)

[MichaelFleeger]

You can get a free cooling vest from MSSA. Call them they can help.