24 months mark

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

24 months mark

Postby LouK » Wed Jan 13, 2010 12:55 pm

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?! :) :)
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Re: 24 months mark

Postby jr5646 » Thu Jan 14, 2010 2:03 pm

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?! :) :)
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Postby yonderboy » Thu Jan 14, 2010 3:32 pm

Same boat as JR5646 above, just a few months behind. Was on Tysabri for 26 months - no relapses, now on a drug holiday for at least 6 months. I have also had the 1 year possible drug holiday conversation with my neuro: she says evidence suggests that you have a much lower chance of developing Tysabri antibodies if you go for the longer holiday. (have not seen the stats for this)

I don't think Tysabri is more toxic than the CRABS: in my experience and from the people I've spoken with at my infusion center over the last 2 years; the side effects are generally minimal.

Biogen just released more info on a JC Virus antibody test that they 'say' will be available by June of this year. Apparently they tested it on the 11 available blood samples of people who developed PML while on Tysabri, and got 11/11 hits. They went further to suggest that in their tests on the general population, the JC Virus is 50 -60% prevalent vs. the 90-95% generally accepted. So if you get tested, and don't have JC Virus antibodies, it follows that your chances of developing PML are 0 - unless of course you pickup JCV in the meantime...

Finally my opinion only: if you are having 5 relapses in an 1 year span, you need something stronger, and unless you've been on something to really kill your immune system, chances of PML (at least in the first year) are virtually nil.

Good Luck with your decision.
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Postby catfreak » Thu Jan 14, 2010 10:42 pm

Jr5646,

I have had CCSVI procedure and am still on Tysabri. I hope to go on "holiday" after my next infusion # 11 or at least # 12 in March. I want to see how I feet for a few months without Ty.

Cat
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Postby jr5646 » Fri Jan 15, 2010 2:29 am

yonderboy wrote:Biogen just released more info on a JC Virus antibody test that they 'say' will be available by June of this year. Apparently they tested it on the 11 available blood samples of people who developed PML while on Tysabri, and got 11/11 hits. They went further to suggest that in their tests on the general population, the JC Virus is 50 -60% prevalent vs. the 90-95% generally accepted. So if you get tested, and don't have JC Virus antibodies, it follows that your chances of developing PML are 0 - unless of course you pickup JCV in the meantime...


Thanks for posting the above Yonderboy... I knew I had read that somewhere but couldn't find it... I think in the interim TY was sucessful for me. I probably would have not known it was helping had I not stopped.. Just don't like the fact that I got worse when I did.. it sucks, to say the least.

I'm having bloodwork this week to test for JC (I've had a bunch of them all neg.). Not sure if the jurys out yet how effective the test is though.


Hang in there...



catfreak wrote:Jr5646,

I have had CCSVI procedure and am still on Tysabri. I hope to go on "holiday" after my next infusion # 11 or at least # 12 in March. I want to see how I feet for a few months without Ty.

Cat


That is great news, Cat... Hopefully you'll fair well, especially since you have only been on for a year. Please keep us posted.

I'd love nothing more than to dump my Neuro and get a permanent holiday from Tysabri too.. Not that it hasn't helped, but it is way too expensive. I read somewhere that (Biogen/Elan) needs to hit the 100k mark of people taking TY just to break even (I guess they are around 60k now). I just have to get into Stanford's trial (hopefully it'll get approved and started soon) or convince someone local. My bags are packed :D but the wait is killing me...

- John
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Postby LouK » Sun Jan 17, 2010 9:33 am

Thanks for the replies!!! I've got to have an MRI scan first to show progression before I qualify for Ty and then decide if I want it. I'm still kind of thinking about sticking it out on Rebif or even trying Copaxone and trying to reduce my stress first and then I still have Ty there if it doesn't work.

I do want to go to Poland and get tested for CCSVI and treated within 2 years so guess getting on Ty and getting treated for CCSVI is an option then coming off the drug completely hopefully.

So could this test for the JC virus become like a regular precautionary thing to test patients on Ty then?

Also is my neuro right that the risk of PML is reduced by taking this drug holiday?
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