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Goodbye Rebif - Hello Tysabri

PostPosted: Tue Mar 10, 2009 11:13 am
by catfreak
Went to my Neuro yesterday for a check-up after 9 months on Rebif.

I have tried to be upbeat and positive but some days I just want to cry. I have a constant fever and I am so fatigued I can hardly move. Well he took one look at me yesterday and said it's time for a change.

My options as far a drug therapy are:

Rebif at 1/2 dose .22mcg :cry:

Betaserone shot every other day :cry:

Copaxone shot everyday :cry:

Clinical Trail for a pill - if open, may get placebo :x

Clinical Trail for Campath - could end up with Rebif :x

Tysabri once a month infusion :? :idea: It's worth a try. I am tired of the CRABS!!

I did not even want to talk Avonex!!!

I talked about it with hubby and thought it over and signed the papers to get it going. If it all works out I should start in 2 weeks. :)

I am so glad to be off the Rebif and this can't be worse.


PostPosted: Thu Mar 12, 2009 7:17 pm
by GeoGuy

I know a couple of people that have gone over to Tysabri with good results. Hope it works for you. Let us know how it goes.


PostPosted: Thu Mar 12, 2009 7:43 pm
by catfreak
Hi Jack,

I had high hopes for my Rebif therapy. The injections aren't bad but it sure was nice not having to give myself one yesterday. I hear it stays in your body for a while after you stop the injections. My body just could not tolerate the constant fever that went along with the shots. I am glad to be off of it and hope the Tysabri works. I'll keep you posted.


PostPosted: Tue Apr 07, 2009 3:34 pm
by burntsienna
hi catfreak,

just wondered, could you tell me why you didn't want to consider avonex? i'm really thinking of what my options might be now. i can't handle the 44mcg of rebif after doing ok on the 22, but my nurse really didn't want me to be on the 22. (she's a 'one size fits all' kind of medical professional - i hate that!). i took avonex years ago and feel i did ok on it, except for the needle. but i know that now they have two sizes of needle, and a thinner one too, plus an auto injector. i also remember when i was on avonex, the injection never seemed to burn and pool in areas around the injection site and my joints like the rebif does. so i just wondered what your reasons for not wanting avonex are.

(btw, i am by no means decided about anything, other than i can NOT stay on the 44! whether i will be able to talk my nurse into that i don't know, and i don't know whether even going back to the 22 is better than trying the avonex again. i know i'd never cope with copaxone, and i wouldn't meet the eligibility requirements for tysabri here in the uk. the interferons seem to work for me, and you can only get tysabri if the interferon/copaxone drugs don't work.)


PostPosted: Mon Apr 13, 2009 7:18 am
by catfreak
Hi Burntsienna,

I am so sick of being sick and of needles. I did OK on the 22mg of Rebif also but still had extreme fatigue. Since Avonex is just Rebif in a huge dose (my opinion) I did not want to go there at all. And the muscle injection just made me sick thinking about it. I don't know if I can even make it make any sense to anyone else but I was just so tired of it all, I guess you could say I had become very depressed on the Rebif and that scared me a lot. I was to the point I could not do my job effectively and I need my paycheck and insurance.

Given the choice of no needles through the week and IV once a month I was on board. The PML with Tysabri does not scare me at this time. Maybe someday it will. The depression scared me and I did not realize how bad it was until I faced the Dr and sobbed about it all. He said it was a time for a change too. He seemed to think I would have the same response to the Avonex as I had to Rebif.

They told me if you can not tolerate the Rebif on the 44mg that you meet the criteria for Tysabri. As long as you tried one interferon and the Dr can say you could not tolerate for whatever reason then you are a candidate. The Rebif worked, but, since I could not tolorate the side effects then that was considered into the decision. The UK may be different. I have a wonderful Neuro here in the States and he just wants what works for me, as long as I am on some type of therpy.

Maybe this makes some sense. Good luck in your decision and please let me know what you decide to do.