to-sabri or not to-sabri? that is the question.

Today is the day that I am due for my Tysabri infusion. I didn’t make the appointment at my last visit because I thought I would wait until I had made the decision on whether or not to continue taking it. I have not come any closer to making that decision.

At my last nuero visit I was told that my most recent MRI showed that I had developed a new lesion in my right frontal lobe. That it wasn’t active at the time of the scan, but that it was there and that it was not there in the previous scan 6 months prior. My neurologist said why take the high risks of Tysabri if it isn’t working. That perhaps I should stop and try something new.

I really thought that Tysabri WAS working! I definitely feel a difference in my MS symptoms when I am freshly infused, compared to days like today when I am 4 weeks out. My fatigue isn’t quite as debilitating, in the warm months the heat doesn’t bother me as quickly. Even the numbness in my hands is less of a prominent quality of my life. I wonder if I will start falling again, if those maddening leg spasms will return with such frequencies. I almost feel like I don’t care if I have a new lesion, as long as I feel a little better!

MS really sucks. That whole relapsing-remitting thing. I have had remittance of a lot of the symptoms of my MS, but a lot of them stick around too. I just get used to them, and with Tysabri it really seemed to make that a little easier to do.

My choices for treatment are actually not “choices”, there is only one treatment that my neurologist says I am able to try. And it isn’t even FDA approved for the treatment of MS yet. Rituxan, or rituximab, is used for the treatment of RA, Non-Hodgkins Lymphoma, some forms of leukemia, and a couple other things I have never heard of. When I googled Rituxan and MS I actually came across an article that mentions my doctor in it. I think that makes me feel a bit better about it, but also has me wondering a bit if maybe she is being reimbursed somehow by the drug company to push it. I guess either way it doesn’t really matter. I wish I could talk to someone else who has used it for MS. And I need to find out if it doesn’t work can I go back to Tysabri and cross my fingers that I won’t get any new lesions?

One of things about these meds is that you can’t just go from one to the next. You have to wait 3 months in between each drug. I have had to do this twice before as I first used the interferon Rebif as my method of treatment, (made me so sick!) and then for a year and a half I did the daily injections of Copaxone until I switched to Tysabri after multiple significant relapses. The thing is with those drugs they didn’t make me feel better. Tysabri has changed how I live my daily life. I am really afraid of losing that for three months, never mind forever!

I have a follow up appointment with my neurologist this coming friday. Hopefully I will have a better idea of what I am going to do or at least what I should ask. I guess for now I will be kind to myself and watch out for the stairs and those damn bumps in the sidewalk.

 

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About kateshunter

First and foremost, I am a mom to 3 amazing and unique kids. Up until I was diagnosed with RRMS in February of 2007, I worked as a full-time paramedic in some high call volume cities. This took me away from my home for an average of 52 hours a week. I have had a difficult time excepting that my MS will probably keep me from ever returning to a full-time job outside of my home until recently, when I realized that there is a blessing in this. I do have remittance of my MS, and although there are symptoms that stay with me all of the time, I am able to enjoy my family and take better care of myself than would be possible if life was still how it was before that fateful day in 2007. I started a blog that is devoted to my MS struggles and triumphs, focusing on my experiences with Tysabri and documenting my relapses. I mentioned early on that I would love to cure my MS with my vegan diet but have since changed my stance on that. I am managing my MS by eating a whole foods, plant-based diet in addition to getting the best MS care available to me at the MS Clinic at UMass Memorial Medical Center in Worcester, MA. I'm currently enjoying life in my beautiful home in Western MA. with my partner, my two teenage daughters and my teen-age step-son. My daughter Sunny and I are actively spreading the word about the benefits of a whole foods plant-based diet and hoping to turn kids and grown-ups a like on to the fun that can be had at our CSA farm and in our kitchen! Check out our blog at whollyeats.com
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7 Responses to to-sabri or not to-sabri? that is the question.

  1. Kate,
    I also had to switch to Tysabri because copaxone wasn’t working for me. And now I wonder if I am going to have the same problem with Tysabri. I’ve been on it for only 2 months but can’t wait for my next MRI. I also feel so much better now. Which I love. Consequently so does my family. While talking to someone else who shares our problem, they suggested Stem Cell Therapy. I was wondering if you had looked into that at all. Hopefully we will always have options. 🙂

  2. kateshunter says:

    hi Janet! as far as I know stem cell treatment isn’t available for the treatment of MS. If I am wrong I would love to find out more!
    I had a year and a half of clean MRIs using Tysabri and I am going to see my doctor tomorrow and probably make the decision to continue using it as my treatment. I am looking at it this way, In two years I have not had any major relapses and only one new little lesion. If I compare that to the two years prior, it’s a huge success!
    Good luck with your treatment and I am headed over to read your blog now!

    • I actually haven’t really started any research yet. I did do a little bit of reasearch a year or so ago and there were a couple of studies floating around. At the time there wasn’t enough wrong with me to a. warent it, or b. be eligible for it. The person that I met did a study in Chicago. I agree that just one lesion doesn’t sound that bad, unless it is effecting something important. I’d probably stick with the Tysabri as well. But it is always good to know your options. Sorry I don’t have more info. I hope that everything works out.

  3. I take Avonex but we are all so different….Tysabri seems to work well for many in my MS Self Help Group

  4. Isn’t it awful to worry about doctor’s potential monetary gains for certain medications? I take Copaxone and after less than a year my doctor wanted me to switch to Gelinya. I felt that we hadn’t given it long enough and besides, while new lesions were supposedly seen, I had not had any outward symptoms. So hard to choose to make yourself feel sicker than you otherwise feel!

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