Wednesday, March 16, 2011

Rituxamib Round 1

Well, as those close to me know, I recently had to stop my regiment of Tysabri. Turns out I am JC virus positive, which is not as scary as it sounds. The virus is very common in the general population, infecting 70 to 90 percent of humans; most people acquire JCV in childhood or adolescence. By itself it is not a huge deal. However when taking immuno suppressants (drugs that lower your white blood cell making abilities) there is the possibility that it can cause you to have progressive multifocal leukoencephalopathy.

My neurologists suggested I try Rituxamib out as it has a much lower risk factor for PML. I gave it a shot, and I must say that round 1 REALLY sucked. On top of having rapid onset symptoms of the flu, and not just any flu, like the worst flu you have ever had, it also made me feel like it was hard to breath. I spiked a temperature of 100.1 during transfusion and was not able to finish the full first dose. Not a huge confidence builder in my opinion. My neuropathic pain has been 10 times worse since taking it however 3 days afterward most of the nasty symptoms have gone away, and I am left just with the pain. My sleep schedule is still all over the place as well.

I am so tired of all these different drugs. I am just beginning to feel like the drugs are worse then the disease. My headache has still not gone away. I still feel like my arms are just lit up with electrical pain and my legs are the same way. I have regained my balance back, and my strength seems to have mostly returned but I just don't like where this has left me. I am calling my Neurologist now about it, but every time I do I feel guilty about it. That is what this disease leaves you with sometimes. Alot of guilt. Guilt at not feeling like the man you should be for your wife. Guilt at not being the father you should be for your kids. I hear my kids fighting and I feel terrible that I'm yelling from a bed to get their attention. That is not good parenting. I feel bad that I'm not taking advantage of the great weather and getting outside and doing things.

I know I am just ones of millions effected by this disease. I am sure that I am better off then most. I feel like I am losing my mind some days. Its hard not to get selfish and see yourself first in times like this. I catch myself buying things I don't need at the grocery store, and not knowing why I do it. Every time I get an MRI and see more of my brain tissue gone I just cry. I am not ashamed to admit it. It becomes a game of what am I going to lose this week. I shouldn't vent, but then again hell, I am entitled to vent a little. I called the Doctor and of course no one can get back to me till Thursday. So tired of the bullshit some days.

Having trouble keeping my chin up today!

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