Tysaberi

[msmom3]

Hello!! I am a 46 year old mom of three boys that was diagnosed in 2008 with RRMS ... I tried Rebif first for about two years - pretty inconsistently ... as I had alot of fluish symptoms and would stop and start back up on my own. Last year tried Copaxone - which I took on and off as well - I think being a daily shot was the problem. I have only had one relapse since my first diagnosis with MS but it is pretty debilitating....cannot feel my feet to walk at all and very stiff. My Neuro has suggested Tysabri and I am JC negative. Any thoughts pros or cons on this idea with the fact that my MS has not really flared up too much in Five Years?? Thanks so much for all your help ... this can be such a confusing time.

[Myoak]

Tysabri is the most effective med approved by the FDA for the treatment of MS.

If you are JCV negative your chance of getting PML is near zero. A small % of people convert from JCV- to JCV+ but even those who are JCV+ have very little risk of PML if they have taken Tysabri for less than two years.

More than 1/3 of the patients on Tysabri are free of disease activity.

Your neuro may have a reason for recommending it. Ask him why he thinks it is right for you. It may be that he sees MRI activity or some clinical evidence which informs his opinion.

JMHO, but it seems as though the side effects of Tysabri are not nearly as discomforting as the other MS meds, if PML is not in the picture. Just my opinion.

There are drugs in the pipeline which may be better than Tysabri and be approved within two years form now.

No currently approved MS drug has more statistical probability of halting or slowing disease progression than Tysabri, according to trial results.

Just some of my thoughts. Best of luck to you.

[ru4cats]

I agree with everything Myoak has in the post. I will have my 40th (?) infusion a week from tomorrow. With 3 boys, most likely Tysabri will provide you with the best chance of a normal life (whatever normal is with a MS diagnosis). I have absolutely no reaction to the drug, just a 2 hour period where I can relax with a good book! I am JC-, and after my 2nd test (have had 4) my neuro said the risk of converting to positive was minimal. I have no regrets.

[palmtree]

I've had a very good experience with Tysabri. If you have had trouble maintaining the other DMDs, you will probably like it.

An infusion once a month is soo much easier. And the nurses pamper you instead of having to stab yourself.

It is an expensive drug so there may be some obstacles with insurance etc.

So if you can get it, I hope you'll give it a try. Let us know how it goes.

[Special Kay]

I started a thread last year on the same subject, (called, I think "Tysabri for Inactive MS" or something like that, I'll see if I can find it and link to it). Lots of good posts offering a variety of opinions.

I encourage you to fully research your choice so you will feel comfortable with your decision. After a lot of research, I concluded that my risk for an adverse affect is extremely low (as compared to other things I never worry about like heart attacks, car accidents, etc.).

As to my MS history: I had one flare, from which I was diagnosed, followed by 6 years of inactivity (now 7), with stable MRIs the whole time, so I have clinically inactive MS. Even still, I opted to start Tysabri last November and did Infusion #8 last week.

It is SO much easier to take than Avonex and I feel so much better. I swear they could be pumping saline in me for all the effect I feel from the infusion. The only negative affect I've noticed is one slow-to-heal sinus infection so far, but nothing that kept me out of work or anything.

I don't think I'll take Tysabri forever, but for now it's a good choice for me. My insurance at first rejected me, but my doctor's office appealed it, and they cover it now.

[Special Kay]

Here's the thread I mentioned:

"Tysabri for Inactive MS?"
http://www.msworld.org/forum/showthr...ht=inactive+ms

[KyleW]

I have only had one relapse since my first diagnosis with MS but it is pretty debilitating....cannot feel my feet to walk at all and very stiff.

If you cannot currently feel your feet, I'd say your MS is pretty active Unless you meant that you cannot feel your feet during a relapse, the last one of which was years ago?

In any event, I have had 20 Tysabri infusions. After #14 my JCV antibody test came back positive. This is only one of 3 risk factors. The other 2 are prior immuno-suppressant therapy and more than 24 Tysabri infusions.

You need to have at least 2 of the risk factors for PML to enter the picture. Even if you have all 3 risk factors the chances of developing PML are in the area of 1.1%.

That said, I'm seeing my neurologist at the end of the month and we are going to discuss switching to Tecfidera.

Kyle

[Remy9111]

IMO I would get on Tysabri immediately if you are JCV -.

Just because you've had a mild case of MS with few relapses so far doesn't mean that unseen damage isn't being done. It is a progressive disease after all. I've been on Tysabri for 5 years and love it. I'm JCV - and have never had a relapse (knock on wood!!!). I went on it pretty soon after diagnosis. I did try Rebif but it made me sick as a dog.

With the Tysabri I only feel crappy for 1-2 days and it doesn't even come close to the interferon flu. Sometimes I don't feel bad but just get very tired after the infusion and come home and sleep for hours, wake up and feel great.

It is the most effective drug out there and I feel like the side effect profile is pretty minimal compared to the others. Plus you don't have to inject! You just go in and let the nurse do everything.

I highly highly recommend this drug. Do your research. Talk to the doctor. Good luck with the choice.

[lindaincolorado]

Hi msmom3, I have been on Tysabri for almost 7 years and Thank G-d daily for it If I could've started it 2 1/2 years earlier (when in trial) I'm pretty sure I would hardly know I have ms, as Ty has stopped the progression of my disease. As it is, my R leg drags, I walk with a cane and need a scooter for distance-wishing I could go for long walks and dance like I used to. Oh well... very grateful I am doing as well as I am !!!
Good luck