Damned if I do . . .

So here we are in Autumn. And here I am with another attack. Seems to be my pattern for the last few years. I think 2 attacks a year isn’t so bad. Better than the 5 I used to have. But my Dr. has other thoughts. He thinks that is too much and is worried about the progress I seem to be making. Getting harder to recover, I am consistently having attacks in the spring and fall. So now he wants me to add a dose of Solumedrol with each of my monthly Tysabri infusions. For those of you unfamiliar with SolMed – it is a high does steroid given by IV. No, not the muscles, hair and zits steroid, but a super beefed up Predisone. But I wasn’t a big fan of that as the side effects are wicked. So we compromised with 4 times a years. Still sucks. But the kicker: I tested positive for the JC Virus with makes me susceptible to PML (a potentially fatal brain aliment). So with the combo of my regular med and the dose of SolMed, I am depressing my immune system so much I have to be very conscientious about any symptoms I have to have. So basically if I don’t do the SolMed dose I could have more attacks and not recover and if I do it I could be asking for PML. Doesn’t that just all suck???

But I guess in the positive – I usually feel pretty good, am staying busy, doing the things I want. It is just this nagging little problem that is a thorn in my side. I would love to hear from anyone out there dealing with something similar.



2 thoughts on “Damned if I do . . .

  1. My daughter was recently diagnosed with PML after taking Tysabri for over 4 years. Her mental state has deteriorated rapidly and this is really a serious disease. I hope that Tysabri gets taken off the market soon. Seeing this disease makes me believe that any benefits from the drug could not be worth this risk.

  2. I’m sorry to hear about your daughter. How old is she? The “screening” they do every month when we go in for our IV I feel is very substandard. There needs to be a better way of preventing this terrible disease.

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