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Posted 7/24/2009 2:51 AM (GMT 0)
confused  I just had another flare wound up in the hospital for another 4 days..Steroided all up again..Wasnt sure if it is the rebif or an exaerbation..MRI says more active lesions in my neck both sides this time..As a precaution we took the rebif to half dose for a while seems to be ok..3rd flare in 7  months I am getting a little to regular in the hospital...Not sure what the next step will be...But going back on full rebif kinda scares me a little bit..I cant seem to make the 3 months before I get the steroids anymore..I usually fizzle out a few days before I am scheduled to get them..Always something.....Sorry for the ramble but I am "roided".....Hope my next post is a long time without being in the hospital!!!       pokey
Posted 8/4/2009 11:38 PM (GMT 0)
HEY Barb,
Geesh, I'm sorry u are flairing again. Wow, pretty bad huh? you landed in the hospital. Didnt your doc suggest Tysabri for you last time? Maybe you should consider it. You keep getting new lesions and thats not good Barb. I hate that you keep getting sick. That Rebif is rough. I was 14 months on that and kept getting flares too. And i felt so achey. If u want to talk about Tysabri, u know where to find me, lol.
Love
Lynn
Posted 8/5/2009 3:03 AM (GMT 0)
Barb,

I am sorry you are having a such a rough time. I know that the thought of tysabri is a bit scary, but I would still be on it if I could. Hope you get a break soon!
Posted 8/5/2009 3:13 AM (GMT 0)
Thanks Lynn and Barb.. It has been rough.Iam real nervous about the tysabri..The new doc. isnt pushing it as much as the other one did.Right now they took me back too 22mg of  rebif instead of the 44.Is working so far but I dont know how long they will have me do that since I am not getting the full dose.I see the doc. on thursday soI will know more then.Last three hospital trips showed new and active lesions in my neck area..Brain stayed the same..Just the darn neck. Something has to give.Like clock work tho. Every 3 months I am in the hospital for 5  days..Grrrr really frustrating..But I know all will settle eventually.Thanks again.Barb
Posted 8/6/2009 7:58 PM (GMT 0)
I am on Tysabri for my second year whereas before I was relapsed for years with really bad MRIs and sound very similar to you. My doctors put it to me this way... take your chance or you will be in a wheelchair (got to love blunt doctors). I don't know about you but I'm only 32 and have two small children that love to play. I'm not giving up...
The chances are slim for PML, it is getting easy to detect and they are getting better at "treating" it
I think clearer, function better etc.

Please consider it and get more info before making a quick choice.
Keep me posted
Posted 8/7/2009 1:43 AM (GMT 0)
I think about it all the time.I saw the doc. today.He is gonna keep me on half dose rebif for awhile and we will see what happens.That way I have time to ponder everything..Thing is I know that tysabri works.But I have seen it not work too. 2 people from the support group I belong to actually got worse being on it.Ijust really need to think long and hard about it all..Thank you for the advice I do appreciate it alot..Because now I can see it works for people too.....Barb

Posted 8/7/2009 10:07 PM (GMT 0)
Mine got so bad after I had my son two months ago they wanted to do chemo then go back to tysabri next week is 2Nd infusion since I delivered on June second. I had lossed vision in
My left eye, had Bell Palsy symptoms and had a half a smile couldn't walk very well weak left side etc . Everything is back to normal except
My eye but with more infusions the better it will get I'll keep u posted so you know some good
Stories too.
What happen to the two people?
Posted 8/8/2009 10:08 AM (GMT 0)
That will be good if you keep me posted on your progress...I know Lynn is doing real good on it too.The guy that was on it actually had to drop out of the support group because he just progressed to where he couldnt/cant get around much anymore.The other one is still functional but it didnt do what everybody said it would do.Still a major struggle.Now we all know everybody is different so what  works for one doesnt mean it works for another.Just adds to the confusion of making a good logical decision..Hopefully the next round of treatment will be out and ready before too long like the pill forms (no more needles)really shouldnt be that much longer...The hard part is things kinda get put on the backburner when you come out of the flare and things are almost back to where they were....Thanks again I am interested on your progess to................Barb

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