Ampyra question

[IFwczs]

I am seeing my neuro on Wednesday and want to ask about Ampyra. Whether due to MS, my mercury poisoning or something else, my walking has been getting steadily worse. Does Ampyra have side effects anyone has experienced? Is it addictive? I am on Ocrevus now, but it has had no effect on my walking so far. Thank you in advance.

[Royjr]

For me Ampyra didn’t work. I didn’t notice any improvements and after weighing the negative side effects that could happen (seizures), I stopped taken it.

[IFwczs in reply to Royjr]

Thank you, I too am worried about these side effects.

[Kenu]

Same as Royce, I didn’t see any difference so I quit. Everyone is different though and have heard it works for some 👍🙏🐾 Ken 🎃👻

[IFwczs in reply to Kenu]

Thank you, I will report what my neuro says.

[Raingrrl]

Hi IFwczs ...I've heard that Ampyra works great for some people but I had immediate side effects and quit after 3 doses. Each of those 3 doses caused me to be really dizzy which since I already have trouble with falls was not a tolerable thing.

[IFwczs]

Thanks! I am going to get over my cold, then probably mercury poisoning, and then try it.

[rjoneslaw]

I have taken it for over 2yrs and it has improved my gait

[mrsmike]

I have been taking it for five years with definite improvement to my gait with no side effects.

[Hidden]

I tried Ampyra. Didn't have side effects, but unfortunately didn't get any benefits either. Where is your mercury exposure from? Just curious. I had my mercury fillings removed about 20 years ago. I don't know if it helped, but I'm sure it didn't hurt. I don't take the flu shot either because of the mercury in it. I take extra vitamin D in the winter, which I've read is very effective in keeping the immune system strong and warding off flu. Don't know if it's due to the vitamin D, but I work in a medical environment and get exposed to flu all winter and so far (knock on wood) haven't been sick. Just my personal choice though.

[IFwczs in reply to Hidden]

KerryOkie, thank you for your reply. I apologize for the delay in responding (work deadlines). My mercury poisoning was caused by Chinese herbs. I am stunned to hear that flu shots contain mercury! At least two doctors told me not to get flu shots, so this year I am not doing it for the first time since I've lived in the US. (I am from Europe, and they don't have flu shots there.) I also had my amalgam fillings removed 15 years ago, but the dentist used a vacuum-type device, so it couldn't have been it. Yes, contrary to some publications that amalgam fillings are harmless, we did the right thing by removing them. How much vitamin D are you taking in general vs. winter? I am on 5 K daily.

[Hidden in reply to IFwczs]

In the winter I take 10,000IU daily. In the summer I take 5,000.

[IFwczs in reply to Hidden]

Interesting. I am going to ask my PCP if I should go up in winter. I am at 5,000. Thanks again for your posts, they were most insightful. What DMT are you on?

[Hidden in reply to IFwczs]

Not on one. Too many potential side effects. I'm waiting for one that isn't as risky. Hoping, but not holding my breath.

[IFwczs in reply to Hidden]

I am on Ocrevus, but it appears to have no side effects. I don't think these breast cancer cases were related to Ocrevus.

[CraigS]

The side effects must be taken in context. When they say you could suffer seizures, check if the drug was meant for people who were experiencing seizures. Of course they might get them again. I thank my neurologist for the insight on that. Research everything, take nothing for granted. I personally did not find the expected results by taking this medication.

I hope it will work for you. I am not a doctor, but I can breed ‘em.

[cheilke]

Ampyra hasn't helped me at all but I have had no side effects. Just be sure that at least 10 hours between doses have passed.

[goatgal]

IFwczs Only one dose of Ampyra (within 30 minutes of taking) caused vertigo that lasted for a day and a half. My neurologist told me to stop taking it and call the drug company representative. It was reported as an adverse effect. In fairness, I know two others who have taken it without problems and found it effective.

[pamgarner]

It didn't help me at all/but everyone is different.I gave it a shot, a couple of months, did not improve my gait.Try it.it may be great for you, before my dr. prescribed it, I had to walk down a hall so he could watch my gait.at the time I was a candidate, physical therpy helped me more/

[StacyHayward]

I love ampyra! For me it improved my walking back to 95% of normal. It’s not perfect but I’m afraid without it I would barely be walking.

I had only one side effect. The feeling of phantom limbs but that has largely subsided.

FYI a generic has just been approved for it as well.

[AngieRowe]

I feel like it helps my that helps with gait, I stopped taking it one for about 2 months and did see a decline. I think it helps a lot combined with physical therapy. I never had side effects that I attributed to Ampyra.

[Johngm]

I tried it twice and though I was part of a study and got a placebo. If you don't try it, it won't work. I do know several people that have had positive results. Try it, it might work. Good luck.

[All7]

IFwczs...I could have written your post. I’m also on Ocrevus, third dose coming up in April. I’ve seen no improvement either. Spoke with my neurologist, he said he’s not seen any difference with patients until after the third dose so I’ll do the third infusion and see from there. He suggested Ampyra, I’m fine with trying it. Would be nice if, after 4 weeks, I was able to get it! First they need prior authorization, then send it to my insurance, then “it’s being processed.” Unbelievable. They tell me one thing and the dr office another. In any event, my neuro said I’ll know within a week if it’s going to help and I can stop taking it if it doesn’t. Fingers crossed for us all....

[IFwczs in reply to All7]

All7, I have had 2 half doses and one full dose of Ocrevus in February. So I guess I need to be patient, two more doses? Please keep me posted on how it goes with you after April. Let's keep our fingers crossed. I have been on Ampyra since last December. My leg can bend again! I also had a walk test after 30 days - they said I walked faster (still with assistance). You need to get a free trial, that's 2-month supply, from the manufacturer. Are you getting it? I The doctor's office has to request it.

[All7 in reply to IFwczs]

IFwczs.....free trial?? No, I’m not getting a free trial. I end up so frustrated trying to get through an hour of back and forth phone calls that I just put it aside til the next day. Good for you, I’m so glad it’s helping you! I’m hoping to be able to say the same thing....if I ever get it!

[IFwczs in reply to All7]

All7, your doctor is supposed to arrange for the two month supply from the manufacturer, not you. Maybe just my doctor gets it. But I would check with the doctor. And there is co-pay assistance, you just have to threaten them to go generic. By the way, do you know there is generic out there? Why don't you try generic?

[All7 in reply to IFwczs]

Thanks for the info. My neuro did mention the generic saying that it would be much easier to get. He’s very good about samples in case the med is intolerable. I signed the forms for Ampyra, they went in on 2/20. It’s Ampyra that keeps messing it up. I was there when my dr’s Secretary called them to find out what was happening. The guy she spoke with said I had to just call and arrange delivery. So I did and was told he was wrong because they still didn’t have a prior authorization from my dr. It’s really incredible how everyone goes through this with pharmaceutical co’s, insurance co’s, dr’s offices....it’s such nonsense. And so frustrating! But I am relentless. I will keep calling.

Sorry about the rant! 🙂

[IFwczs in reply to All7]

That is why we are here - to support each other, no apology necessary. I could tell the difference today when I had a 13 hour gap between the two pills instead of 11. If I were you, I would really try generic though - it is the same as my e pill for a fraction of a cost.

[IFwczs in reply to All7]

Read today's post about Ampyra. So generic Ampyra is not the same as brand, after all...

healthunlocked.com/mymsaa/p...

[All7]

I will, thanks for the lead...