Why is Tysabri so scary

Sharon left a comment on my blog yesterday and I can’t figure out how to email her. Her comment couldn’t have come at a better time. I feel so great that I cannot imagine treating my MS at the moment. I have been thinking that way for several days and finally I called Dr. Foley’s office to schedule my first infusion. I know better. I know I won’t feel this way forever. I know I have a chance of feeling even better, longer with Tysabri. It wasn’t until I was typing this email to Sharon that it really clicked for me. Thanks Sharon!

Dear Sharon,

Thanks for your note. Avonex and Rebif were both horrible for me. In fact I attribute most of my sickness this past year to the drugs and not to MS. I talked with my Neuro about LDN and was strongly considering it. Unfortunately, there is no clinical data that it helps. Of course I take extra ginger and turmeric and there is no clinical research there either but I feel without a treatment like Tysabri, things will go downhill for me. I read about so many people using it as a last resort drug and that isn’t what is was designed for.

Initially, I had reservations about Tysabri and still from time to time I think, “I feel so good now, why be on any drugs…”. Here is what made me decide to take action…
A. I cannot tolerate the other MS drugs
B. After 10 years, 50% of untreated Relapsing Remitting MS turns to Secondary Progressive
C. After 25 years, 95% of untreated Relapsing Remitting MS turns to Secondary Progressive
D. There has not been ONE Death or ONE case of PML in an MS patient using Tysabri as a mono therapy.

Keep in touch and let me know how you are doing. If you are ever considering Tysabri and want the facts, check out Laurensblog She has great links and really knows the facts about Tysabri.

Take Care!
Courtney

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6 responses to “Why is Tysabri so scary

  1. Hi Courtenay
    I’m with you on the treatment issue. I used to be a real bunny-hugger and thought I could fix my ms by eating/ living well. In the process, I picked up some disability that I’m still trying to shake, although it’s much better than it was, thank goodness. I was on Betaferon for four months, and just couldn’t live with the side-effects. So I went off it and just treated relapses with solu-medrol, which were becoming too frequent. Tried LDN briefly, didn’t work. Tried chelation and Calcium AEP – didn’t work. Wanted to try Tysabri, but it wasn’t available in South Africa yet. (Now it is, but Medical insurance doesn’t cover it yet).
    So I went on the phase three trials for Fingolimod – the new oral ms therapy. Been on it for four months now and it seems to be working. A little capsule in the morning, and no side-effects WHATSOEVER. Finally something that works.
    Best fo luck to you with Tysabri. I will be following with interest.
    MS is too big to risk going without treatment, I agree.

  2. Hi Again…The “anecdotal evidence” for LDN is strong and there are finally some clinical trials going on. There was a very successful clinical trial of LDN and Crohns disease done. So I am content to stay on the LDN-I have two other friends with MS on this drug too. I have had MS symptoms for 11 years with a diagnosis of 5 years. I have never had solu medrol and really hope to never have it-I think the risks outweigh the benefits of that drug! I had to talk my neuro into prescribing the LDN but I did it. So I don’t feel as if I am doing nothing for my disease. I eat well, I exercise most every day and I get lots of rest, stay out of the heat etc. I live in So. Calif. I am a nurse so I look at things carefully before trying them. I go to the neuro next in October so we’ll see what she says about me then. I am still relapsing-remitting MS but have never had serious relapses at all. I sort of have very slow progression. I still work one twelve hour shift at the hospital here.

  3. My blog address (I don’t know if I included it previously):
    http://www.maggsbunny.wordpress.com
    Sorry for misspelling your name!

  4. By the way, I am just overall tired of needles and injections and Tysabri is an IV. I like taking a pill.

  5. I’m getting ready to do my first Tysabri infusion. I’m feeling good about it, having only slightly survived Copaxone, Rebif and Novantrone.

    I found this blog helpful today. It’s cool to read about others experiences with their infusions.

    http://blog.healthtalk.com/multiple-sclerosis/life-with-ms/it%e2%80%99s-time-to-talk-about-tysabri-again/#comment-14710

  6. oops, that link didn’t work out. here’s the whole thing:

    http://blog.healthtalk.com/
    multiple-sclerosis/life-with-ms/
    tysabri-a-progress-check/
    #comment-14703

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