Hi all,
I have been dx’ed with Rapidly Evolving Severe Relapse Remitting MS, and was just after some more info re likely timescales/outcomes - I know everyone’s different with this, but as opposed to just RRMS. Are there any things that go in your favour / against it etc…? It would be good to here from people who’ve had this dx and what’s been their path. I’ve been recommended Tysabri (post lumbar puncture, MRI, and blood test! if I haven’t been exposed to the JC virus). Is anyone on this, and what do they think about it?
Thanks all,
Emma (Forest) x
Well, the bad news is that your MS is evidently looking rather lively, but you know that already, and the good news is that this potentially fast-tracks you for Tysabri, a drug that is normally only available to people who have done poorly on one of the first-line DMDs (the interferons and Copaxone). You will also be aware that Tysabri comes with risks of its own (PML) which is why it is only offered to people whose MS looks nasty enough to warrant the extra risk, even though it is a very effective drug.
If you are on Facebook, look up UK Tysabri Users. It is a closed group, but if you are considering tysabri you will be welcome to join. Lots of good advice and experience on there.
I am sorry that you have this dx to deal with. Tough stuff, I know.
Alison
x
Hi Forest
As Alison said above - join the facebook group - it is wonderful!
I can only offer my advise about Tysabri. Its been brilliant for me. The Drs say it doesnt improve anything that has already happened - but I think they are wrong! I couldnt walk without support when I started (Feb 2010) and now I walk around like no-ones business!! I am JC+. It depends where you are as to your hospitals stance on this. I am treated in Southampton and they have no problems if your are JC + they just keep an extra special eye on you. I think I read that there is a new blood test which doesnt only say if you are JC + or - but also tells you your levels so you can be better informed about the chances of PML. The whole group I am in for my infusions are JC + so you wont be alone if you turn out to be.
But for me personally being on Tysabri has changed my life and it would take alot for me to give it up. (although I am about to try a break as hubby and i want to have a baby) but I will stop Tysabri when I get preggo and go straight back on as soon as I can if we are lucky enough to have a baby.
I dont know about lumbar punctures as I never had one - I was diagnosed within 78 hours of my first relapse and after 1 MRI, but I am sure someone else can give you some info on them.
I dont know if my ramblings will help you ro not - I hope so.
Hayley xx
Hello 
well the lumbar puncture really hurt and I cried like a baby but they did that to be 100% sure it was ms! I was relapsing one after another I tried copaxone but it did nothing at all apart from making painful lumps under my skin, sadly my ms is very aggressive. So after finding out I was jc neg which was good news but my consultant said even if I was positive he believed I needed it as it is the only strongest treatment on the market at the moment. To be honest I had huge hopes it would get me back to me but it didn’t. I still suffer from all the previous relapses I had. BUT ON THE BRIGHT SIDE I have only relapsed once in a year thanks to tysibri! After I have tysibri my head hurts and I feel very tired and weak but after a couple of restful days I feel back to me! I still have my ms days but tysibri is definitely the right drug if ms is aggressive! Sorry for the essay Tamsin
Thanks for the advice all,
I’ve joined the group. I think I’m just really terrified of what’s ahead in life (but I’m sure that was true of all of us when firstly dx’ed). I guess the whole problem with this condition is that it’s unpredictable - which is so hard to live with. Having certainty in life is really important, particularly for me as I have enough uncertainty as it is.
Take care all,
Emma