Apologies if this is already on but I can’t find my original post so maybe I did something wrong. I started taking this drug on Monday and wondered if anyone had any thoughts on it. I had read some old posts which encouraged me to try it and my consultant has been very helpful in setting up a free trial and arranging a walking test.
The private prescription is going to cost around £190 per month so I guess I really need to see some improvement before I commit to the cost. What I really want to do is to be able to walk further than I can at present.
I’d appreciate hearing from anyone else who’s on or had tried Fampyra, good or bad.
Hi, I’m waiting to hear from my neuro/ MS nurse as to when I can try this drug. I was told that if you are a responder it could start to work within two weeks. I’d be very interested to hear how you get on and what you think. As you say at £190 a month there has to be noticeable improvements! GOOD LUCK! Regards, Nina
I’m now on day 7 of the Fampyra, I haven’t noticed any side effects, maybe a bit of extra dizziness - but is that the Fampyra or just my norm?
I know I’ve lost muscle over the last year as I haven’t been able to walk as far so I’m trying to build my legs up using my exercise bike and horse riding.
I do feel more energetic and want to do more though I am trying to pace myself, I’m quietly confident that the Fampyra is making a difference as I don’t feel the same exhaustion from doing simple things like hanging out the washing. I want to see what next week brings before I get too excited.
Actually taking the drug has been problematic, I’m terrible at taking stuff so am having to set alarms to remind myself, Is it really critical taking things on an empty stomach and leaving 12 hours between each tablet?
Hi Skye, It’s great you feel a little more energetic…here’s hoping next week bring lots more improvements…all extremities crossed for you. Re the dizziness…who can say…suppose you’ll never know really if its the norm for you or a side effect. I don’t know anything about taking the drug so haven’t a clue as to how vital it is to take on an empty stomach, it is difficult isn’t it…especially when you’ve got a mix of drugs. Hope if it works for you that you can get yourself into a routine with it. Would love to hear from you again to know how it’s going. Good luck again, Best wishes, Nina
Hi Skye, I have started taking Fampyra today. Like you, I am really hoping that this treatment will work and improve my walking. I am only able to walk about 10 metres with two crutches and use a wheelchair outside of the house. I have tried lots of things in an attempt to improve my walking. F.E.S. didn’t work because the electrical stimulation set off spasms in my legs. I have also tried Botox injections into my leg muscles because of the spasticity and have been lucky to have intensive neuro-physiotherapy. However, nothing seems to stop the gradual deteriation in my walking ability. I am feeling both excited that the Fampyra may work and extremely anxious that this is the last thing left to try and am aware that it only works for about 40%. I would like to stay in touch with you and compare notes on the Fampyra treatment, if you agree? Perhaps we could be a bit of support for each other. I am a little worried about the side effects , etc. I hope that you continue to see improvements. Amily x
I dont have MS but have radiation myelopathy on my c-spine which causes a lesion (which has now gone on MRI). Anyway my problem is with spasticity on right leg (esp calf and quad). This gives a spastic gait. Mr neuro let me try the fampya but it didnt help me as I think my problem with walking is just to do with the spasticity rather than weakness. Fampyra I reckon does not remove spasticity and if that is the reason for your slow walking then I think that you will notice no difference.
I am hoping to try botox next. Essentially I have had an attack which caused a lesion on the spine. This lesion caused the development of spasticity. The lesion on MRI has resolved but the ****** spasticity remains !!!
Hi Moyna, I have weakness in my legs, drop foot and spasticity in my quads, calfs and adductors. Both legs are affected, one worse than the other. The Botox actually made my walking worse. I found it very difficult to even lift my legs at all. My physio said that I was obviously using my spasticity to help with my walking and when that was eased by the Botox the weakness in my legs made it more difficult to walk. Until anyone tries Botox you may not know how much the spasticity is masking any weakness in your legs. Luckily the Botox wore off after 12 weeks and my walking reverted back to usual. My neuro explained that Fampyra is thought to work by letting signals pass down the nerves more normally and therefore it may help with the weakness and spasticity in my legs. I am very hopeful that this will be the case. Amily x
I have only one leg affected. When I had the attack I was definately slightly weaker on the right but I could walk ok. 10 months after the attack I started to notice spasticity as real tightness in the muscles. This has gradually got worse even though all other symptoms such as numbnes, bladder/bowel issues etc and even the lesion itself have all resolved. I am beginning to believe that once spasticity starts coming there is no stopping it as it follows a course. My neuro physio thinks a few botox injections might kick the spastic muscles into touch and get them back in track. I only hope so.
I’m reading all this with interest but still think it’s ludicrously expensive (BUT can you really put a price on just feeling a little more normal again?!)
Moyna, I’m on my 2nd week of LDN, it’s too early to tell for me but it’s supposed to help with spasticity primarily - is it worth looking into further for you? I was quite pleasantly surprised to hear about other things people have found it’s helped with so I’m remaining optimistic
The idea of FES makes me nervous (can’t help but think I’ll start cooking) lol, but I’ve not had my neuro rehab appointment yet so I guess I’ll ask more about it then.
Thanks Sonia, I have never heard that LDN helps with spasticity. I thought that it was supposed to help reduce immune system activity. FES is really good for people who have peripheral nerve weakness which has caused dropped foot. My dropped foot is just due to calf spasticity so when I tried FES it didnt work. I take baclofen but I find that I can only take a low dose. On a high dose my calf tightness was reduced greatly BUT my other 3 “good” limbs went weak, floppy and jelly-like.
I’m giving it a go as have foot drop and spasticity, by the evening I’m literally dragging my right foot as I just can’t quite get my big toe off the floor, it drives me crackers! When I posted I was starting it there were a few comments that it helped with other things so I’m remaining optimistic
I hope people do update here as I’d really like to try the Fampyra if the LDN doesn’t help. It get a but crazy round here sometimes with lots of new threads being started and not necessarily updating on things
Interesting to read all your comments and alternative treatments, most of which are new to me! Why don’t we all get the same information and choices?
I’m into my 2nd week of Fampyra and am remaining hopeful. I do seem to have a bit more dizziness and have had a couple of bad bouts of indigestion but no other noticeable side effects and I’m not sure I can blame the Fampyra.
I do seem to be walking much better and in fact did a shortish walk with my dogs that I haven’t been able to do for months on Monday plus their evening walk. Needless to say I suffered for it on Tuesday - maybe pushed myself a little too far! But felt great Monday, no foot drop or anything and had much more energy. I’ll try to build up a little slower it would be great not to rely on my mobility scooter for everything.
I have to agree with Sonia about the expense but if it works it’ll be worth it. I was a bit worried about side effects too Amity particularly as I seem to have gone from taking the occasional headache tablet to swamping my poor body with all sorts - maybe the cause of the indigestion - but until you try you just don’t know.
Let me know how you’re progressing Amity, it would be great to compare notes and I promise to keep updating Sonia.
I only found out about LDN by reading about it on this forum. The same with Fampyra and my consultant just shook his head about that, I wasn’t aware you could get it privately until I heard it here.
Well, my hip is hurting today but I’ve walked up and down the office with completely ‘needing’ my stick today so I’m not holding my breath but really hoping the LDN is doing something good… I was really tired at the weekend and had pretty achey muscles too (which is weird since I have been doing not much at all!)
Hi Skye and all, I am sorry to be late replying to your posts. I have been ill this week with another U.T.I. which I am hoping is not due to taking the Fampyra. It is listed as one of the side-effects but as I am prone to get U.T.I.'s anyway, I am hoping it is just a co-incidence. I have carried on taking the Fampyra - day 6 today. I have not noticed any improvements yet but have not expected to as I have had a high temp. which always makes my symptoms worse. I am hopeful that once the antibiotics start working that I will pick up and start to notice some improvements. I am always keen to hear of other people’s experiences of treatments and medications and I have learnt so much from this forum. I promise to keep you all updated with my trial with Fampyra. Amily x
Thanks Amily, I was just about to hit the ‘like’ button but that seems wrong when you’re poorly! I hope you feel better soon and look forward to your updates
I too am waiting to start taking fampyra in a few weeks but having trouble with neuro sending me a prescription ! There are some encouraging notes on people using fampyra on this site. look back to comments written on 10 June 11 June and 30 June . Best of luck with trials - will report back myself when I eventually get supply ! Tks. Tony
Sorry to hear you haven’t been well, hope you recover quickly, I did try to send you a private message from the site but couldn’t get it to work - sorry about that.
I’m now on day 14 and things still look promising. Thursday I did 2 walks and Friday I took the dogs for a walk! I’ve had to use my scooter for that walk for the past 6 months, it wasn’t fast and probably not pretty but I did it and then walked round the supermarket in the afternoon (I knew there was going to be a drawback)!
Saturday wasn’t a great day, a bit tired in the morning but felt ok later on and feeling good today again. My consultant isn’t seeing me until the 26th which will be the start of week 4, bit of a shame as I will then be away for 3 weeks so won’t be able to get another supply of Fampyra until I come home again. I suppose it will be proof positive that the drug is helping so I’m not too down-hearted.
Thought I would give an update on the Fampyra. I’m coming to the end of week 3 and am definitely able to walk further. I’m trying not to rush things but have been walking my dogs which makes me feel great and tempts me to do more than I should. My consultant agreed that if I was feeling the benefits I could have another prescription so that I don’t have a break whilst on holiday and BUPA were great at arranging a delivery for me. The prescription was faxed through to them and organised within 2 days. I didn’t like the paying for it bit but it’ll be worth it if this continues. I haven’t experienced any major side effects either which is good.
I’m going to speak to my MS nurse and see if I can’t chase up my neuro rehab appointment as taking the LDN has shown me a few good days and the spasticity is improved BUT my hip just isn’t quite right anymore, so I think I need some physio first - one foot faces front when I step, the other points pretty much sideways and I end up sort of dragging the leg…
Hi Skye, So pleased that your seeing some improvements. I’m still waiting patiently…neuro on holiday…MS nurse will chase him when he gets back…can’t wait to try it Have a really lovely holiday Nina x
