Hello. Hope you are all well. I’m in a bit of a dilema. I have been on tysabri for almost 5 years now and during that time have been fortunate enough not to have suffered a relapse or any problems with the drug. Although I wasn’t tested for the JC Virus before I started on tysabri they have started testing. The first time I was tested I was negative but this year I tested positive meaning the my chances of developing PML has increased to 1-385 from 1 in 2000. I can continue with the tysabri or I have been offered the chance to switch treatment and start on gilenya. Obviously this is a very new treatment and having a look has got quite a list of possible side effects. I am unsure and don’t really know much about gilenya (am doing research). So is anyone on gilenya? Have you had any bad side effects? Have you had any improvements? I know everyone is different and can react differently to drugs but because I don’t know anything about gilenya I would be grateful of any advice! Also is anyone is the same predicament? Thanks x
No experience of either treatment, but thought this blog might be useful.
http://multiple-sclerosis-research.blogspot.co.uk/2012/12/research-fingolimod-after-natalizumab.html
Lol. I thought this was about a fixture in the Greek football league
I’ve had 34 tysabri infusions . I’m lucky not to have had any side effects or relapses so far. I was in hospital when I had first infusion unable to walk ,etc, Within months I. Was back walking and working. So far I’ve chosen not to be tested until I’ve decided what to do with the result My ms really frightens me , been diagnosed for 3 years, had 3 relapses. Hope.
Hi,
I have been taking Gilenya since September 2011.Prior to this I was on the Fingolimod (Gilenya) drug trial from 2007 to 2009.I’ve since found out that I was taking the drug and not the placebo.
I was diagnosed in 2006 and have never taken or been offered another dmd.From stopping the drug trial in 2009 and being on no medication to being prescribed Gilenya in 2011 the number of lesions I had doubled.Since being on Gilenya I don’t have any new lesions.I have had new symptoms but they weren’t classed as relapses.
So I’ve really been taking Gilenya for over three years.
I do get colds more easily.My white cell count is a bit too low,even though this a known side effect.Apart from that I can’t think of any other problems with it.I am glad not to have to inject or have infusions.You could have a look here:
It might be useful.
I haven’t really looked at ithe site myself because I was given so much information at the beginning.
PM me if you want.Hope this helps.
Take care Brenda x