Fampyra /Ampyra update - 3years on

Update on Famyra or Ampyra medication to help with my multiple sclerosis and my walking, fatigue and speech.
For those of you that don’t know, I was diagnosed with Multiple Sclerosis in 2000. I started off with very mild symptoms and did pretty well for about 10 years. My symptoms started to worsen where I was having problems with my balance and walking and because I did not feel balanced,I started using a walking crutch, which was when I was introduced to Fampyra by my neurologist with a months free trial.
In the first instance when I started taking this wonderful new drug, I was able to walk a lot faster with my crutch. So I then decided to start taking it every month, and as this drug is not prescribed on the NHS, I was now forking out nearly £200 per month. At this point because it was increasing the speed of my walking, I was happy to pay that.
I’ve now been taking it for just over three years and I wanted to share with you an update On how I’m getting on with this drug and how it’s making me feel.
I think it’s very important to weigh up the options, but to also tell you my experience in having this drug.
I hope you find it informative and helpful if you are thinking about taking it.
If you have any questions please do send me a message and I will answer back as soon as I can.
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Deepa Thakrar
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[@LeeBarberMcrUK]

Thank you Deepa, I was due to discuss going on Ampyra with my neurologist on Friday but this video has been really informative and give me something to think about 🤔🙏🎗 Stay strong 💪

[@DeepaThakrar]

Hey Lee, always happy to share my experience. Hope your doing well 😊🙏🏼💪🏼

[@vickiwoods6838]

It's my journey completely though i have been on it much longer & I like you have stopped it twice & experienced exact same issues in not being able to do what I normally do. It was interestingto know it was not in my head, that it really is an issue

[@candacehiatt7742]

Thank you for your update!

[@Rkhoi]

Deepa thank you, my dad just stopped it 2 days ago and the wideawl symptoms are exactly what you said he thought the wideawls would last couple of days but from what I was saying could take weeks before you are back to your normal self speacially that he's been taking it for a year and half. Thank you for your videos and all the best to you

[@DeepaThakrar]

You’re so welcome. I’m glad he’s stopped taking it. I really wish I could. Hopefully he’s not experiencing withdrawal symptoms anymore. Best of luck to him, hoping he stays well x

[@Rkhoi]

@@DeepaThakrar thank you deepa, he ended up going back on ir after the 3rd day the whidrawl symptoms were too much for him to handle at that point. Anyways thanks for you videos and hope you are doing well

[@craiglewis6145]

Very interesting video, thanks so much for posting it. I keep being offered this drug but ive rejected it every time. Everyone tells me about making walking faster but nobody has mentioned distance. Did you find that you can walk longer distances? Thanks.

[@DeepaThakrar]

@@craiglewis6145 Hi, I’m so glad you found this video helpful. My fatigue still kicked in after a while which ch slowed down the walking. My main issue with this s drug that I couldn’t get off it when I wanted to. Even trying to wean myself off it was hard, so much so that you i’m back to having it twice per day. Without it, I act like a drunk old lady, hands that don’t work and curl up, unable to transfer and slurred speech, not to mention the brain fog too. My advice is to eat and sleep well and definitely do weight barring exercises. Hope this helps and good luck on your MS journey, stay well x

[@cherylvl1036]

Do you have access to the compounded version of Fampyra? I’m from Canada and I have a prescription for 4-Aminopyridine (the active ingredient in Fampyra). My compounding pharmacy compounds the formula and puts it into capsules. They are not slow release like Fampyra but they do work. It is cheaper than Fampyra in Canada and it may be cheaper for you as well if it’s available to you. Good luck with your journey.

[@DeepaThakrar]

Thanks Cheryl, I’ll have to find out. I didn’t know this information. I think o will ask my doctor first and see what they say. I hope you are keeping well 🤗

[@paa5451]

Im in Florida and my husband has Secondary Progressive Advanced MS and his Neurologist recommended trying it bc he is still very strong. Right now he cannot stand unassisted and just transfers (not easily). Hes 60. But we called the Ampyra co. to ask more detailed questions and they told us this med started out as a compounded med and I called our U.S. compounding pharmacy here and it is only $60/month! Hes starting it in the next couple days with PT. Hope that helps.

[@DeepaThakrar]

@@paa5451 thank so much for the info. I’m so glad your husband is going to start. Please let me know how it goes. I would love to see how it makes him feel. I honestly believe the results will be remarkable and please try and do some physio with that and you’ll see the difference. Best of luck to him x

[@DeepaThakrar]

Hi Cheryl, thank you so much for your response. I actually do need to find out about this from my pharmacy and will ask them too. I’ve managed to get on a trial and I’m going to see if I qualify for it, which is something that I am in the middle of at the moment. If all goes to plan, hopefully I’ll be able to double up the medication. I hope you continue to feel well. x

[@melissaryan6817]

Good morning, thank you for your videos. I found it hard to find information about it from people who use it. I am 1 week in and feel worse, walking is worse, burning feeling down my legs, trouble sleeping and mentally feeling fuzzy. Did you experience side effects?

[@DeepaThakrar]

Hi Melissa, I was actually the opposite when I first started taking it. I felt so much quicker and stronger, even using 1 crutch. Now if I don’t take it I get a fuzzy head, brain fog, can’t concentrate, my speech slurs, I get really fatigued, my hand starts to curl and not work and most importantly I find it so hard to even move my legs. Let’s just say I’m an addict to this drug 😥. I wouldn’t advise anyone to take it if they can do without.

[@ronnygibbon]

Do you know what your baseline abilities are? Is it possible the Fampridine is improving your mobility and energy levels and when you stop you go back to your baseline?

[@DeepaThakrar]

Hi Ronny, It’s definitely not my baseline. Unless my baseline changed after my stem cell transplant. Over the past 5 years I’ve progressed a little more and unfortunately nothing has helped. The little that fampridine does for me these days I am grateful for. I just wish it was available on the nhs.

[@jennykale4081]

try Cost Plus online pharmacy. It's ran by Mark Cuban. My neurologist recommended it. I was paying $170 per month after insurance and now I pay $225

[@jennykale4081]

Typo... I now pay $25 per month including shipping

[@jasonmordecai8212]

I’m going through HSCT at the moment in Singapore and your videos have helped me. How much did it improve you or didn’t it in the long run...

[@DeepaThakrar]

It’s coming up to 2 years now. I wouldn’t say I’ve improved but you have remember I had sepsis before I had the treatment. Also I had hsct to stop my ms from getting worse, anything else is an added bonus. I still believe my symptoms will improve over the next year or so. Good luck with your treatment and I hope it goes really well for you.

[@jasonmordecai8212]

Deepa Thakrar thank you means a lot. After being diagnosed earlier this year was a big hit for me because I did travel the globe as a photographer and all of a sudden one day woke up to symptoms and everything got halted. I hope to one day have my life back as it was with this treatment but I know it’s not a cure, my MS is not too bad yet so I’ve caught it just in time 🤞🏻 I hope you improve over the next year or so you can only get better . Thanks for your kind words 😌

[@DeepaThakrar]

Jason Mordecai I’m sure you have caught it early by the sounds of it. I know many people that have had really good results when having it done early on. I just wish I had known about it a lot earlier on. Best of luck to you and a speedy recovery. I’m sure you will get back to where you were before your diagnosis. 😊 keep an eye on your diet and exercise, this is a must

[@jennynicholson6449]

Thank you so much for this. They've taken this model straight from the class A drug dealers' book haven't they?! Get you hooked, make you pay. In this case leading to a two-tier system where those who can pay have better health than those who can't. I'm so sorry you're stuck with it but thanks for the warning and I'll stay away. Sending love and thanks to you.

[@DeepaThakrar]

Thank you for taking the time to comment. Yes, you are much better off without it. I honestly feel so terrible without it, it is like a class A drug!!!

[@Roadwaymike]

Thank you so much for this video. I’ve just started taking it 11 years in. It’s only been a few days and I’ve already felt parts of my left leg that I haven’t felt in over a year since my last exacerbation. I’m really hoping and praying for a positive outcome. Also I’ve got it for $22.50 without insurance on Mark Cubans website. I’m in America.

[@spencerd9325]

If it was free would you take it? Does it still work as well as it did in the beginning? My friend recommended it for my walking

[@DeepaThakrar]

Hi Spencer, my apologies for not getting back to you sooner. I’m still having to take the medication. Unfortunately for me it only makes a slight bit of difference but without it I am overly fatigued and can’t deal with the symptoms that he brings on. If it was free now? I would probably take a whole tablet twice a day as recommended only because I feel it would work better than it does now. But honestly knowing what I know now, I would go without it and wish that I had never started it. I am very reliant on it which means I’ll probably have to take it for a lifetime and as you may know all tablets have side effects, I just don’t know what mine is yet. The best thing that I would highly recommend is to do some physio that strengthens your muscles and keeps your muscles working because after all the things I have tried, Physio is the only one thing that will help to keep you active. I hope this helps, and feel free to reach out

[@spencerd9325]

@@DeepaThakrar I miss walking normally so much and Im not sure excercise will solve the problem- Should I not try it and see if it helps? Im hoping in 5-10 years there will be drugs that help people like us (not just newly diagnosed patients)

[@spencerd9325]

@@DeepaThakrar you also said it has little impact on your walking? is that because you're not taking the full dose

[@janicem4382]

I wonder if the effects you were having were a result of withdrawal.

[@001authentic]

Have you tried to see if they have a financial program to help you with the medications? how are you doing now? my doctor recommended this medication for me and I came upon your videos. so I've just been researching but I'm going to pray on it. pray that you getting stronger everyday

[@DeepaThakrar]

Unfortunately I don’t really have a financial program here in the UK. Are you in the UK? For me personally, I wish I hadn’t started this medication. I was doing much better without it but as my MS progressed I was more reliant upon it and now I can’t do without it. If you’re doing okay without it, it’s probably best you don’t start it because once you do it’s difficult to stop.

[@andrewi5921]

I tried it in past didn’t work. Stopped for a year. Would I be able to go back on it?

[@DeepaThakrar]

You can always go back on it if you wanted. I don’t know which country you are on but if it’s the UK, you will have to pay for it. As I mentioned in my video, I’m so reliant on it and without it I have all sorts of problems.

[@runningwoodchucks]

I am seeing a neurologist tomorrow about this drug. Not sure whether to stick or twist

[@DeepaThakrar]

Thank you for your comment, personally I wouldn’t go for it but that’s my opinion. I find that without this truck compare to how I was if I don’t take it I get overly fatigued to the point where I feel really drunk, my hand gets very fatigued so it doesn’t work as well, my speech slurs and I really struggle without it. I was never like this before. I think it’s like with any drugs you get so used to it you almost become hooked. Again this is just my opinion but I feel it’s fair to advise. If you take it for more than two years you will be able to come off it if you ever wanted to.

[@Skypods1]

happy new year. did anyone feel better with amantadine ?off topic; is it hard to phathom if ms is really covid ? the symptoms are often identical we’re entering year 3 and there’s more research pointing to this belief.

[@DeepaThakrar]

Hi Vic, That’s very interesting to hear and the first I’ve heard of it. I will probably have to do a bit more research. Happy New Year by the way x

[@Skypods1]

nice to hear from you, the struggles are real , physiotherapy doesn’t help with progressive type?- what do you 🤔

[@DeepaThakrar]

Hey Vick, thank you for taking the time to watch my video. Physio therapy doesn’t stop MS from getting worse but it helps to keep whatever is working working. Physio is fantastic for making your body stronger. Even I am secondary progressive but if I don’t do physio for a few days I really struggle to walk the tiny bit that I do.

[@janackova]

You’re NOT supposed to cut the tablet in pieces!!

[@DeepaThakrar]

I know that. But I can’t afford to take two and by having 1 per day, I cant get through the day so I’ve been doing it the best way I know how control my day

[@larrytornetta9764]

⁠​⁠@@DeepaThakrarI started taking delfampriden last month. One months supply is $25 at mark cubans cost plus website