Post

Just Giving Up Rebif..

I con't really even remember my first Dx date.

First I tried all the herbal remedies, but the MRIs showed that the disease was progressing anyway --- Alas --

 

So it was on to Avonex... That took a while to get used to, in fact I'm not sure I ever did.  I took if for four years and had a bad experience every time I injected... Wiped me out for a couple of days...  I got where the needle didn't freak me out anymore... but then had a major relapse (from which I have not fully recovered)....

 

Lets try something stronger? On to Rebif ...  Twice the interferon of Avonex and 3 times a week instead of one... More = Better?   Got a few more years without much trouble, then in May of 08 here comes another relapse...    Now I'm getting really scared.  So I discuss with my Neuro...

Once upon a time I was going to take Tysabri, but it got pulled because those folks died from PML.... I was still tied up in paperwork so I never got an infusion.

I'm now in the "Washout Period" -- Which is also scary, not Rebif, no nothing...  Not sure I feel much better without the Rebif...  So on July 30 08 I will get my first infusion of Tysabri.

I'm getting to old to not stay aggressive with my treatment.

I'm hoping for the best - we'll see how it goes....

Hugz n Blessed Be )O(

=Wiccad

 

 

 

Wiccad Wiccad 41-45, M 5 Responses Jul 24, 2008

Your Response

Cancel

OK --- We've been back on Tysabri since Feb 2011 --- There's now a JC Virus Antibody test that they are giving as part of a clinical trial. I'll let you know how that comes back, and what if anything we do about it. The nurse who drew the blood told me not to freak out because most people test positive, but I have not heard the results of that... and I'm doing pretty good these days...



Best & Blessed Be )O(

=Greg

OK -- So haven't given an update since I'm on the other side. I took TYSABRI for two years, at which time some believe the Toxicity of the drug is too dangerous. So I stopped.



Biogen/Idec got on the phone with me and recommended I stay on the drug.

My Neuro and I decided to use Extavia (Beta-Seron) next for a while...



I began Extavia on 8/6/2010 = So I survived they Tysabri experience just fine and have had no relapses since going onto Extavia....



So that's where we are now...



Best n Blessed Be )O(

=Greg-

Dear WICCAD,

I have a similar story to yours. I was diagnosed with RRMS in 2005, and the first med was Avonex. Hated those huge-*** needles! Had another exacerbation a year later, then another 4 months later so neuro thought to step up the meds, and put me on Rebif. After a couple more years and a couple more flares. I heard about the re-introduction of Tysabri, and talked him into let me take a chance with it. I just saw him yesterday, and he signed me up for the TOUCH program, so after the Rebif washout, I should be ready for my first infusion. I'm still searching comments about Tysabri on the net, but I'm encouraged by the comments so far from those receiving infusions. Glad you are doing OK on them, and look forward to you keeping us informed!

So Far, so good... I get wiped out (fatigue) on the day of the infusion, but apart from that... I notice no other side effects. I have not gotten worse.... So I'm still hoping for the best. Thanks for asking.

Hi there! My sister has been taking beteferon for 10 years, now a relapse is back. Currently consideing to start Tysdabri.

Have you started taking it as scheduled? How do you feel now?



Please let me know.

Best

Thank you