I posted a few weeks ago about giving up Fampyra for good. This was partly because, in the 27 months I’ve been on it, my walking has deteriorated a lot. To walk 10 metres, with Fampyra, it used to take me 7 seconds - when I last tried, nearer 15 seconds. Without Fampyra, it used to take me 12 seconds, now 28.
I saw my neuro yesterday and he was absolutely definitive that there is no evidence for Fampyra causing deterioration. I was somewhat convinced while talking to him but not so sure now. I’m not going back on it anyway - it was also disturbing my sleep.
I had a free 4-week trial of Fampyra back in September 2013.
It certainly improved walking speed for initial 7-10 days.
Then, sadly, things went downhill in a big way - and have remained dreadful ever since.
Now, I’m nowhere near knowledgeable enough to categorically state that I wouldn’t have deteriorated this much by now, whether I tried Fampyra or not.
Just find it odd that the fastest deterioration I’d ever experienced occurred immediately after trying this drug?
I’ve been diagnosed with MS since August 1998, and never experienced such rapid progression.
Not at all scientific, but my heart says Fampyra is entirely responsible for my mobility being as poor as it is now. My own fault for hoping that a medication would help me. Why should it have when no other medication has ever helped !!
When will the neurologists listen to us. Fampyra must have gone through years of testing before being available. All the people who took the months ‘free trial’ must have been warned about the possibility of it actually doing the opposite to what it was intended for. Did they have to sign a ‘disclaimer’ - lf not l think l would be taking legal action.
l read all about it - after feeling the excitement of there being a drug that actually made you walk better. Who wouldn’t want to take. But there were the BIG BUTS - and it was suggested that after the initial good results it was then all down hill.
l am glad l did not take it - but then l am very sorry for all the folk who have had their hopes dashed. And these good folk have inadvertently helped others to decide to keep clear.
As for a neuro who says it is not Fampyra that has caused this - well - who do we believe. l for one believe the pwms who sadly took it.
Lets hope that the trial for Biotin comes up with something that will make us feel somewhat better.
There have been a few anecdotal reports that suggest Fampyra speeds up progression, but the drug clearly works for some people and we need a trial for certainty. I spoke to Professor Giovannoni on this subject a couple of years ago and it remained a serious concern his, although obviously no proof.
I expect you have already seen this blog, but just in case.
Hi, I have either radiation myelopathy or progressive MS.
In Jan 2013I had a treatment for radiation myelopathy paid for by myself (£6000). In June 2013 I had an MRI scan and the area of demyelination on my cervical spinal cord had resolved. I still had foot drop but it was better as was every thing else.
In Sept 2013 I asked to try fampaya to see if it would help the foot drop. At week 3 I started to get a spasm in my arm which I had never noticed before and my foot drop became bad again. I was advised to stop the tablets and I requested a new MRI and the dodgey area was back on my MRI.
I initially thought there was a mistake on my scan in June. It was checked and there was no mistake and it was definately me.
I said to my neuro that Prof G on the Barts blog thought that fampaya could put additional pressure on damaged axons and making them worse. I was wondering if the fampaya destroyed my newly repaired cord (ie repaired from the avastin). The neuro said that I could have a point.
Anyway the radiologist said that maybe the avastin made the spinal cord onlty “look” normal when it wasnt. I am wondering whether to take avastin treatment again with no fampaya afterwards this time.
Like I said originally, my neuro is sure that the Fampyra has no ill effects and the deterioration would happen anyway. I don’t know what to think. I think it would be impossible to come up with a double-blind placebo controlled trial that could test this since people who respond to Fampyra would know whether they are taking it or not.
I’m really struggling - my walking seems to have deteriorated in the three weeks that I have been off it. This doesn’t fit with Professor Giovannoni’s hypothesis - as I understand it this is that the action of the Fampyra causes the deterioration.
I was put on the list for Fampyra, just before all the funding for it in the south was withdrawn.
A neuro and an MS Nurse said that they would support me if I wished to try it - but the cost would come from my wallet.
Meantime I had done a fair bit of research on it.
Of those who took the free trial, only about 10% got any real benefit.
Some had to give up the trial before completion because of side effects.
I thought that if it improved nerve conductance for the legs, it would do the same for every nerve - and this might not be a good thing. So I said “No thanks”. TBH, my dropped foot was not a problem at that time.
There was some evidence that stopping Fampyra would see an almost immediate return to the “without” condition.
From subsequent anecdotal evidence, I am sure I made the right decision.
I just had a look at the info from the MS Trust site. It mentions 2008 being one of the first trials. I also read on the Barts blog that there had been a 5 year trial.
Those people who responded well, continue to respond.
I started it in August last year and I’d had very little nerve conductivity in my right leg - right back in 2000 at diagnosis. The girl doing the evoked potentials tests asked how I managed to walk, but I just put one foot in front of the other, although it is like watching my right leg moving on a video image!
Fampyra has been a miracle drug for me. I’m glad it still works and that I can feel my toes again. I have had very little MS progression over the last 15 years. I can do more now than I could at diagnosis.
This is the most unfair and infuriating issue with MS. My MS will be mine alone. My experience may help someone. Even if it’s just one other person.
It enabled me to go back to work. I can stand for as long as I want, but my arthritis, which happened due to bad knee tracking, due to bad nerve conduction, due to yep, MS, is hell. I still don’t know exactly what my right leg is doing, but I’m careful. I always follow someone so that I can see where to step.
May I ask the same Q as sewingchick? I have been on Famprifine/Fampyra for 12 months and although I can do the ‘timed walk’ well, everything else is hellish. Thanks M
I just stopped. From what I understand about the drug - that it is a slow release form of a drug that works at levels it is hard to keep up at without the clever slow release formulation - it didn’t seem that coming off it fast should be a problem. Also, I was worried that it might be harming me.
I’m not so sure that it was harming me now, because my walking carried on getting worse for at least a month after I stopped the drug. My understanding of the stuff I read on the Barts blog was that the drug’s (bad) effects happen while you are taking it - but I could be wrong about that. Anyway, having been off it for five weeks, my walking has stopped getting worse and is even a bit better than it was last week. But I had Tysabri on Monday last week and my walking is usually worse for a few days before and after that.
This stuff is really complicated - I don’t have the answer to whether Fampyra is a good or a bad thing.
I’ve been on fampyra for about 3 years now. I have deteriorated in that time. There have been a couple of occasions where I haven’t been able to get more tablets (healthcare at home’s fault) and my walking became much worse without it - worse than it was before I started taking it. I don’t think I ever fully recovered from the deterioration I suffered from the fampyra being stopped temporarily.
I’m scared to keep taking it but scared to stop as well. I wish someone could tell me what to do for the best.
Has anyone stopped taking it and eventually improved?
I share your concerns. I was thinking about how to go about getting a Fampyra trial course when I heard that it can occasionally activate latent MS-related TN and that the activated TN doesn’t always stop when the Fampyra does. I dropped the idea there and then.
It’s great that it works well for some people and I would dearly love to walk a bit faster, but I don’t fancy that small but very nasty risk.
joyj, l do hope you will soon see some improvement in your mobility. You were very brave to try Fampyra. Especially when it had 5 yrs trial. And appeared to be fairly successful. Then we started hearing about folks health /mobility getting worse.
l was interested - but the cost prohibited me. Now the unfortunate outcome of so many had certainly put me off.
The Biotin theory for people with PPMS/SPMS has intrigued me - and l am taking the high dose of Biotin which l am getting from amazon. l joined the facebook group Biotin for Progressive MS. Good crowd - all doing their own research and making their decisions. Several members are trying to get a pure source of Biotin Powder - at a price reasonable for everyone to buy Hopefully a non-profit making scheme. So far it looks like £15 a month.
Many of us are already taking it - and have already noticed - 4 weeks in - that our energy levels are up and strength/mobility has improved. Whether it is all in the mind- how many times have we heard that - l do not know. But l have started walking a few steps without my rollator - whoopee - and can lift my left knee right up - this l have not done for years. Oh, and l can stand on one leg for a few seconds. Small steps - but forward steps.
This is the best news for PP/SP ms’ers. And l cannot see why it would not work for all types of MS.
So a lot going on right now. We have found out the type of Biotin used on the trial - so sourcing one that does not have the usual fillers and added calcium is the aim. How to make the powder into tablets is another. ln powder form it is hard to measure such a small amount correctly. l have even ordered some micro scales and callibrating weights. Like going back to school.
l have not told friends/family about my own Biotin trial - l am waiting for someone to notice that l am doing things l could not do a couple of weeks ago. My skin/nails/hair already looks much healthier. But as l am taking 30 times the RDA suggested on the pill pots for normal use l am expecting those sort of improvements. Biotin is used for hair regrowth - just hoping l do not become the ‘bearded lady’. But if l can only be a bit safer on my legs - and better balanced - the beard can stay. l will be able to sing at next years Eurovision!!!
The Biotin available that does not have calcium as a filler is Healthy Origins/MSM/ Swansons. And l take 10.000mcg x 30 a day. With a meal - as it can make you feel a bit sicky on a empty tum.
l find myself looking for things to do now - more enthusiasm. Can’t be bad.