Jc test and tysabri

Hi I wonder if ant one out there can help me. I am gathering info-weighing up pros and cons about TYSABRI for myself. If the results of the JC test come Back negative for PML, the neuro has given me to options for DMT. They are as follows 1- TSABRI 2- COPAXONE and MIXOANTONE. Bit of history. This is my 2nd relapse in 6 months. I had steroid drip in hospital-found it eased symptoms. I do not take any medication as yet. I was dx in may. Still not got over relapse-since mid April. Neuro said It was quite aggressive as time between relapsed was short and this episode was bad So in short I would like to know what experiences are like in “real life” (good, bad, indifferent) and not in a glossy, stating what it could be like Thanks in advance or your help Mike

Hi Mike, have you posted this on everyday living? You might find more experienced users there…I can’t help as am still pre-diagnosis. Best to you, good luck with your decision making. Lucy x

Hi Mike

Just in case you have not done a search on Mitroxantrone (I assume that is what you meant):

http://www.mstrust.org.uk/information/publications/factsheets/mitoxantrone.jsp

It looks like your Neuro wants to stabilise the progress of your RRMS, so that Copaxone could have a chance of doing some good. Cannot help with the combination effects, but I wish I had started Copaxone six months earlier (and I did have the chance to do this). My relapse rate has substantially reduced.

Geoff

Hi Geoff The doc still has not told me the progress of my MS, as this was my first appt. he seemed to think that due to the severity and speed of my 2nd relapse I am a candidate for either treatments. Thanks Mike

Hi Mike,

If it were me then I’d opt for the Copaxone first. Have you had a look at the ms decisions website - it’s really useful in helping to make a decision.

I started off on Betaferon - but as it turns out I’m one of those few that interferons just do not agree with, so from there I went onto Copaxone.

Copaxone is daily injections but incredibly it soon becomes part of your daily routine. The first few months were fine - a bee sting kind of lump appears when I first inject, then a bit of redness - but other than that it was okay.

A few months ago though I did have a severe reaction to it, so for the next couple of months it’s a case of ‘see how I go’ on it. My neuro is talking about taking me off dmd’s altogether and monitoring me before trying either Tysabri or Gilenya. I think I’d rather opt for Gilenya first…but we’ll see how things pan out.

We’re all different - my body just doesn’t seem to like them and on top of the ms I’ve not been well for over a year now.

Many people find Copaxone helps them, so if it were me then I’d give that a shot first. Whatever decision you come too though, make sure that you’re well informed and remember that all drugs have side effects but that doesn’t mean to say that they’ll affect you.

Good luck and let us know how you get on.

Feel free to mail me if you need to chat

Debbie xx

Hi all Thanks for your comments, they are appreciated Mike

Hi all Thanks for your comments, they are appreciated Mike