The BS of my MS

I was diagnosed with Multiple Sclerosis April 11, 2006. It was a fairly quick diagnosis and there are days/weeks I can mostly ignore it. For those days I can't, this blog documents my journey.

Monday, February 08, 2010

I am facing a difficult decision. Previously, I was on Copaxone. I was on it for about 5 months. I started having some new symptoms on the other side of my body, which made me think something in a new area of my brain was going on. So, I went to the neurologist and an MRI confirmed that, yes, in fact there were new lesions and new activity going on in my brain. The neuro determined Copaxone was not doing anything for me and had me stop it. (Gladly, by the way, because I hated it with a passion!)

He also recommended I go back on Tysabri, as that was the only thing that seemed to work in terms of MS medications. I had been on it for almost 2 years and went off of it about a year ago, in hopes to start a family. Life circumstances changed, a baby was not in the immediate future, doctor didn't feel comfortable with Tysabri anymore, and had me go on Copaxone. His words were, "I am not convinced with Tysabri, but for some reason it worked for you. So that seems like the best option."

I agree, in many ways. For almost 2 years, I had no new activity in my brain--no new lesions. I seriously pretended like I didn't have MS except for the monthly 2-hour infusion I had to endure. Otherwise, there was no reminder.

However, now I am having some questions and doubts about going back on it. There are risks, namely progressive multifocal leukoencephalopathy, which is a rare brain infection in folks with compromised immune systems. It can cause mental retardation and even death. There have only been 31 cases of PML since the drug was reintroduced on the market in July, 2006. Eight people have died. And while that is a small number, relatively, there is no indication that these people were "at risk" in any way. It's just random. As a result, the FDA has issued an alert.

Second of all, I am not ready to get sick all the dang freaking time. Previously, I had a severe sinus infection, upper respiratory infection, bronchitis, etc. I caught *everything*. That's a set back, and while it's not deadly, it still is less-than-welcomed.

Thirdly, I do want a baby in the next couple of years. I am trying to finish my dissertation and then we'll see where we are. However, because of the relative newness of Tysabri on the market, there is little research about how Tysabri affects fertility, babies, etc. once a woman goes off of it. It's class C, meaning it affects babies in-utero. But what are the effects afterward? I don't know if I want to chance it.

I am pretty young; only 30 years old. So, I have a lot of time to live with MS, and I don't want it getting worse or increase its activity or cause disability in me. However, I also have a life to live and I don't want the MS medication to take away from that.

There is so much to think about.


  • At 8:56 AM, Blogger Lauren said…

    Hi Heather,

    It's been a while since I posted a comment on your blog. I did however notice you stated in regards to PML:

    "...Eight people have died. And while that is a small number, relatively, there is no indication that these people were "at risk" in any way. It's just random"...,

    Could you please provide a link that verifies eight people have died, because I believe that only five people have died, and two of them did not even have MS (they were two of the trial patients).

    Additionally, all four of these patients were at very high risk of developing PML, they were not random at all. They each had severely compromised immune systems due to previously been on medication such as Methotrexate, Remicade, Azathioprine/Imuran, and Novantrone, etc., all of which can remain in the body for months even though previously discontinued by the patient.

    And specifically, one patient who had passed away was previously on Methotrexate for her RA condition elected not to complete the recommended plasmapheresis treatment & chose only supportive care until her passing.

    Furthermore, a majority of these patients that developed PML were previously treated in Germany with Novantrone which can also have lasting effects in the body even though previously discontinued prior to starting Tysabri, and their case histories did not indicate what their washout period was, so once again, these patients did not "randomly" developed PML.

    In any event, I hope that your MS stays under control and I wish for you nothing but the very best that life holds for you--

    Lauren :)

  • At 2:01 PM, Blogger Heather said…

    My source

  • At 12:12 PM, Blogger Lauren said…

    Thank you for the link Heather, and you are correct regarding the eight patient deaths, however please note that Biogen disclosed the following:

    "Prior use of immunosuppressive (IS) agents occurred in approximately 50% of PML cases. Most commonly, the agent [IS] was mitoxantrone [a.k.a. Novantrone], but also azathioprine and methotrexate, or sometimes prior use of more than one of the above...".

    See page 2:

    As previously stated, I believe (IMHO) that these patients noted above were more susceptible to developing PML because their immune systems was left extremely low due to these prior medications, with the majority of these PML patients being treated in Germany previously with Novantrone.

    It is my understanding that the CD4/CD8 PCR test is quite reliable when checking competency of the immune system. Said test is simple blood test that can be ordered by a treating neurologist that suspects a patient's immune system to be in jeopardy of becoming too low.

    In any event Heather, good luck with your decision.



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