Kind of interesting to see the different views of neuros ... even they can't agree ... lol
Mine was/is not a fan of Tysabri at all.. He thought it was too powerful.. I insisted on it as rebif wasn't working for me either and I didn't like the side effects (fever/flu like symptoms). In the back of my mind tho, I just thought he wasn't really interested in putting forth the extra effort involved in monitoring us. Basically he couldn't just write a script and get rid of me .. haha Not only that but he quickly jumped on the "two year - holiday / washout" theroy.. He took it a step further and wanted a 1 year washout.. I have yet to see any concrete evidence / research confirming this approach either...
I am currently on Ty (started Oct. 2006) and did very well on it for the first two years.. Zero side effects and easy delivery (better than sticking myself three times a week, for sure) My neuro tried the "break" after two years (26 infusions) and I quickly went down hill. Was off all meds for about six months and practically had to beg to be put back on. I really didn't see much improvement while on Tysabri, but now realize it was working. During the two years I went thru some extremely stressful times as well, especially loosing both of my parents... Looking back now, I know that it helped otherwise, I probably would have been reduced to a jellyfish with that amount of stress.
Anyway, in my experience I wish now that I never took that "holiday".. I have not really improved since going back on either - approx. 8 months ago. But I guess the goal here is to hold off progressing, which I feel I haven't.
In your case, it may just give you some much needed relief from the attacks... Even if you only have two years until something better comes along.
As ccsvi becomes more prevelant, you could even stay on TY and have the procedure.. Thats what I'm shooting for anyway. Hopefully I can drop the meds altogether someday.
As far as PML goes... Well, I think with continued monitoring you can minimize the risk. I believe ongoing research into the "risk" may show that it may be an even lower risk that they originally guessed (1 in 1000), but only time wil tell.
Look at it this way - Hopefully you used up all of your bad luck when you received the MS diagnosis.. not only that, but you have 999 chances of not getting pml either..
Best of "luck" to you though... whichever you choose !!!
LouK wrote:Hey guys,
Well I have had 5 relapses in the past 11 months and I saw my neuro today and he wants me to consider Tysabri. He doesn't feel my current med (Rebif) will be strong enough and my MS is progressing to quickly. I had a stressful year in 2009 and I think that stress massively affected my relapses and am weighing up the pros and cons of Tysabri at the moment and whether I can perhaps control things a little better by working on reducing my stress.
He is quite a smooth talker and bigged up Tysabri. Whilst I appreciate it is a good med for some people and could very well be for me, its the risk of PML and my bad luck that worries me. Plus the fact that it is a more toxic med than the others.
He also said that to reduce the risk of PML, when patients get to the 24 months mark (none have yet the longest Tysabri patient there is at 20 months) they will take a 6 month break from the med to give it a chance to clear out the body and start again.
I would appreciate peoples views on my thoughts and also whether he is right and that 6 months does clear the drug out of the body and allow you to start again?!
but the wait is killing me...