the brooke pity party. you are invited.


(Bring kale.)

I am officially ditching Gilenya.

(And changing to WHAT, you ask?? Argh.)

So as you may remember, my white cell count has been all over the place — mostly dangerously low — from about the 6 month point of Gilenya on. (I’m almost at 15 months.) I hadn’t really gotten sick… then this year. Sinus infection, a few stomach viruses (which they say aren’t related to MS drugs but what if they affect gut flora…) and that was just winter quarter. Since spring quarter started in April, I’ve been a mess of rolling colds and sinus infections. Three rounds of antibiotics this year, already.

I sent my doctor the “enough is enough” message last Friday. She had suggested Tysabri as my next drug to try… but at the rate I’m going (having had 3 drugs fail me in 3 1/2 years) I’m wary to try a drug that stays so long in my system. Something that’s a monthly infusion? If I have a side effect, it’ll take a long time to wear off.

I suggested I go back and try Rebif again. I don’t have that many sites where I can do sub-Q injections, but now that my 3 abdominal surgeries were 2 years ago, maybe I’m less sensitive there.

Earlier today, though, I started on my pity party of not being able to take any of the orals, which revolutionized MS treatment for all of us. I’m going back to the “stone age” of shooting myself up 3 times a week… like I used to do. I remember when my neuro started me on Rebif, and told me about these promising new orals that were in the pipeline (Gilenya which was almost approved, and the still-in-research “BG12” at the time, which is Tecfidera. Neither is tolerable for me.)

I know, I know… I should be happy there’s any medication I can take to slow down my disease progress, right? It makes traveling a pain, with an injectable, and I have at least one trip planned. I have to go back and check to make sure my hotels have refrigerators… sigh.



3 Responses to “the brooke pity party. you are invited.”

  1. And I think I am moving in the same direction. I am on Ampyra which has worked phenomenally for me. However, my doctor wants me to try the new one. It’s intravenous twice and scares the bejesus out of me but not walking and falling are worse

    • Hey tresswann, why does your dr want you to change? I know that Ampyra is not a DMT, so maybe that’s it?

      I’ve just had a “mortality hitting me” past few days… and feeling very fearful of “how soon will I become secondary progressive” since I now look back and was probably symptomatic 10 years pre-diagnosis… I’ve been living in denial too long.

      All I can do is fundraise my butt off. And be an advocate. And tell people what it’s all about (not in a sarcastic complaining way, but factually — keeping things light and positive).

      MS hasn’t really scared me for a while… but it’s starting to, again.

  2. 3 Steve Yool

    I am standing with you. ❤

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