Tysabri

[Cosmobirdy]

I'm just curious .... For any of you who are on Tysabri, I was wondering if your neuros had changed their treatment plans or recommendations because of all the new PML cases and the acknowledgement by Biogen and the FDA that risk goes up after 24 months.  I hear some are now pulling their patients at 18 or 24 months.  I saw my neuro yesterday, and we discussed it in detail .... we are staying the course at this point, which made me very happy.  (I go for #18 in a couple of weeks.)  We are always re-evaluating the situation, but right now we both feel it is still the best option for me.

I was also wondering, with those of you who have been on it a year or more, have you noticed more issues related to your immune system being suppressed?  I seem to get sick every time someone looks at me cross eyed, lol.  Just finishing the 2nd round of antibiotics this month, and I have alot of problems with my skin that the dermatologist said are due to long term immunosuppressive medications.

I miss you all, and think of you even when you don't see me here.... :)  Hope everyone is hanging in there.  I'm trying to lurk more, and hopefully I will soon feel up to participating more - I'd like to be able to try to help the new folks the way you guys helped me when I first started on this journey ... :)

Take care ... Bye for now,
Rita

  

[Cosmobirdy]

Hi ... :)  

How are you doing so far?  Don't fret about getting sick alot while on Tysabri - not everyone has the same issues I do.  Both my family doc and neurologist have told me I'm "not normal" more than once, lol.  I never seem to react to meds like other people.

Good question about going to every other month after 2 years - I don't know if anyone has really looked into that.  When I had my 3 month check up last week, my neuro and I discussed the issue in depth.  (I will get infusion #18 next week.)  

Some docs are pulling their pts off Tysabri at 18 or 24 months and giving them a 6 month "drug holiday" - but there is no evidence that will reduce the risk of PML at this point.  Plus, while you are off Tysabri, you could develop antibodies, and then it would not be effective if you start it back up ... and there is the issue of the MS having sort of a "rebound" effect once Tysabri clears the system totally, in 2 -4 months or so.

At this point, we are staying the course - but we re-evaluate the situation each month when I get my infusion.  I am very fortunate in that my neuro's office is an authorized TOUCH infusion center, and my neuro is the one who actually starts the IV each month ... so I am able to touch base with him, even if it isn't an official office visit.

Please keep in touch and let me know how you are doing.  If you have any questions or just need to vent, feel free to contact me ... :)  

Talk to you later,
Rita

[Guitar_grrrl]

Hi, Rita,
I just started Tysabri for the first time last month. I'm currently enjoying having a virus last only 3-6 hours, so I'm NOT looking forward to being sick!  All that aside, I guess that's why I need to be on it...I wonder if anyone has looked at the idea of Tysabri every other month in the 2nd year?

Good to see you here!
Guitar_grrrl

[Cosmobirdy]

Hiya!  

How are YOU doing??  Thanks for bumping the post ... :)  I'm guessing there's not really anyone else here on Tysabri?  Or maybe they just don't feel like talking about it, which I can totally understand.

I'm OK - thanks for asking .. :)  Been a tough winter, but I'm hanging in there.  I get sick alot these days.  The Tysabri seems to have more and more of an effect on my immune system.  Having skin issues due to it as well.  Also having alot of stomach issues the past few months - the GI guy feels that the MS is causing my stomach to empty slower, and thus causing alot of other problems.  I'm in the process of yet more tests, lol.

I got approved for SS disability just before Christmas - I cried for 3 days ... :)  I was relieved to not have to go thru the appeal process, but it was hard to hear that door closing softly in the background, you know?  So I'm gradually coming to terms with that issue, and now trying to figure out what I am supposed to be doing with this next phase of my life.  I know God has a plan and it all happens for a reason.

But all in all, I can't complain.  I'm still blessed in so many ways, you know?  Looking forward to meeting Lulu on Thursday - we've been trying to plan this forever, lol!

Bye for now,
Rita  

[sllowe]

Hi Rita!

Was glad to see you here? How you feeling?

I'll give this a bump for you.

Miss you,
Shell

[Lulu54]

Lunch?  Thursday?  I'm free, are you? We'll keep trying!   :-)

I would love to talk about your Tysabri experiences in person. I have no personal experience with this and don't know who on ty around here has been doing it for a longer period of time.

be well,
L