The hospital that I attend are considering starting to provide Fampyra. (I guess that they are waiting to make sure it’s 1-year licence gets renewed next month - NICE have not put it on the list yet). The MS Nurse was not certain if there would be an OK for its use alongside Copaxone.
Has anyone here used it yet - with or without Copaxone as well?
Geoff
I hesitate to post this, but thought you might be interested in this view of fampridine from Professor Giovannoni. I asked recently if he still held this opinion and he confirmed the concern still exists. No evidence of course, but one to keep an eye on methinks.
http://multiple-sclerosis-research.blogspot.com/2009/10/fda-approves-fampridine-for-increasing.html
http://multiple-sclerosis-research.blogspot.co.uk/2012/03/ms-research-day-2012-fampridine-talk.html
Yes, l have read this Whammel - very disappointing to us with spms - l thought at last something to help - now we learn it will probably make symptoms worse.
Thank heaven for ldn.
F.
All I can say, whammel, is that I am very glad that you did post the two links.
My own searches had not picked these up.
In a quick read-up on Fampyra (and I was only told that it was a possibility for me on Tuesday) I had already got a few concerns. This really is one of those drugs where the patient has to do a simple (simple?) cost benefit assessment, so any new data is welcome. In my case (pushing 75) it looks like coming down to the benefit of improved walking for a year or two, versus a more rapid progression over a year or two. It may come down to: could I get more things done in the time that better mobility would give me, or would a faster progression take abay too many things that I can still do now. Could be a big decision.
Geoff
Apparently, it doesn’t work for everyone, so you can always try the stuff first and then decide. Nothing is proven and it’s certainly something I intend to follow with interest.
No doubt you have already looked into ldn as a possibility, but I tend to agree with Campion.
All the best with your tricky choice.
The way it was put on the manufacturer’s fact sheet is that you have a two week trial.
If it does not deliver the expected benefits in walking speed - that’s it. No more.
I suppose that is a fair way to go about it. From the manufacturer’s point of view, that is. On the other hand, they must rely on a lot of data from trials that may indicate that improvements will show in that time.
I looked at LDN a couple of years back. The only things that have put me off are the lack of any data from trials, and the attitude of all the MS professionals that I have spoken to about it. I am about to come under a new Neuro (but am not down to se him until next Jan) when it will come up again. If they do offer me Fampyra, I may raise the matter of LDN again at the two week trial.
I know that there is a new wonder cure for MS that will be available just after I am no longer able to benefit from it - the question that I have is what will make by last few years ag good as they can be.
Geoff
I was briefly on a fampyra trial. No one had any concerns over DMDs, so I think Copaxone would be fine (assuming you go ahead after the above).
The reason I was only briefly on the trial is that I had to come off fampyra after only three doses because it triggered the worst migraine I have ever had in my life. I also continued to have very bad migraines for months after this, despite stopping the drug so quickly. (My migraine was long standing, but had been mild and very infrequent.)
This is nothing but speculation, but fampyra is a potassium channel blocker and the sodium-potassium channel is involved in some forms of migraine - and apparently mine?
So, just a word of caution if you happen to suffer from migraine. It might not happen to you of course.
Karen x
Geoff
New post about Fampyra - and Graf has answered saying how well he has done - in two weeks.
Thanks for the bump, Frances.
I also had a PM from Graf1 saying much the same thing as he put in the other post.
While this thread wes building, I had my copy of the report from my MS Nurse to my surgery.
What caught my eye was a little bit about my still being eligible for Copaxone because I can still walk 100 metres. Yes, I can walk this distance, with two sticks and FES, but not without. From what Graf1 has written, the advantage from Fampyra is about as good as that from FES. There is, I think, an implication that there could be a lot of us being offered Fampyra (or at least being proposed for it), in the next few months (assuming that the EU licence is renewed). It looks like the society thinks so too.
Geoff
This could be called “Read The Small Print”
I re-read the bit on Prog Giovannoni that whammel flagged up. Printed it off ant it came out tiny. Copied the text and pasted it into Word and printed that - and saw that it was dated 2009.
The latest thing that I have found is:
This is a regional NHS view. In short, it works for about 65-70% of those who trialled it. Out of that number, roughly half only got small benefits. The cost is such that it is not worth giving to those who only get small benefits (£4K+ per year). What I have not yet found, and I intend to keep looking, is any sign of Prof Giovannoni’s concerns coming true. So teh jury is still out on this one
Geoff
Hi
My MS nurse told me that the drug company is offering to fund the drug for the first month. As it is evident in the first two weeks if the patient will benefit from Fampyra then there is no cost to the NHS for any patient for whom the drug is not effective.
This is a smart move from the drug company and should help with concerns about the cost of a drug which may or may not be effective.
Anne
I tried 4-AP a while ago (Fampyra is a slow release version). My private doctor gave me a prescription and I obtained it from the USA. It cost about £60 per month.
Is an NHS GP allowed to prescribe Fampyra, or does it have to be a neurologist?
John
Hi,
I have been put down for a Fampra trial, got to get goahead from PCT. Read info about fre trial with interest. Famprya does not make you walk in a markedly better way, just stops muscles getting tired quite so quickly, at least that is my understanding
Would like to try FES to help with walking. I use a MuSmate to help with my walking, could not survive without it. See http://www.aid4disabled.com/musmate/. aId4disabled is my website
Hope that helps.
Patrick
AnnieB is right. The link above that I posted (it gives a “North East Treatment Advisory Group” report) confirms this. There is no cost to the NHS for the drug itself for four weeks, so the first two-week trial has only the medical staff costs. While a MS Nurse could do the timed walk stuff, the final decision and prescription must be done by someone who is experienced in MS.
That answers johnh, since the average GP does not have enough experience to do it.
And, for patrick.b, I think (and hope as well) that Fampyra could also help with some of the muscle control that many of us have lost. His MuSmate looks like it helps bend his knee - which is something that FES is not so good at - as well as lifting his dropped foot . If Fampyra helps with flexing the knee as well, It could certainly make a difference to my walking. I am not suggesting that it could do away with the need for a stairlift, for example, but it could facilitate stair climbing and put off the need to spend big money.
Must deal with my Blue Badge renewal while I still have real problems .
Geoff
I knew there was a possibility of some nasty side feects with this drug, but now we have a FDA warning.
http://multiple-sclerosis-research.blogspot.co.uk/2012/07/fda-warns-about-seizures-with-ms-drug.html
Most drugs have potentially serious side effects, Aspirin and Paracetomol included.
This a known side effect of this drug, which is after all licenced so I assume that this means the risks have been assessed and weighed up.
I am curious as to why Prof G is so cautious about this drug that he took the time to put this on his blog. As, ‘whammel’, you seem to be on good terms with him would it be possible to ask him?
Thanks.
My view is the more information we have the better placed we are to make a choice regarding treatments. Presumably, the FDA does not issue drug warnings for no apparent reason.
I don’t know Prof G personally, but have attended some of his talks and read the blog regularly. He is a MS specialist and strikes me as a chap worth listening to, although you may disagree. I did ask your perfectly reasonable question on his blog and the response is included here.
http://multiple-sclerosis-research.blogspot.co.uk/2012/03/ms-research-day-2012-fampridine-talk.html
Thanks whammel
I agree that the more information we have then we should make better informed decisions. The only problem is the quality/reliability of some of the information on the Internet. As a lay person it is hard to sort the wheat from the chaff.
As somebody with SPMS I am following the Fampyra debate closely.