Saturday, May 3, 2008

May 3 update

Paul continues to improve with Remicade (infliximab) infusions every six weeks. He can now move his head up and down and flex his spine a bit. He used to love to dance and now can "dance" a bit in his chair when he hears "good" music on MTV. His voice continues to improve. His knuckles are less red and swollen and he can bend his hands not freely but better than before. the large bump on his left wrist is slowly diminishing. All good news. He is also using Imuran as his DMARD. It has been six months with no adverse reaction. He was only able to use methotrexate for six weeks before a reaction and sulfasalazine for ten weeks before he converted.

I am so glad Paul has not reacted to the "mousy" part of the Remicade. We have been so lucky. I cannot wait until the fully human version of Remicade (Golimumab) is approved by the FDA (aka the F'ing DelAy). Even better will be CNTO 1275, Ustekinumab (anti-IL 12/23), with only one subdermal injection (no more infusions!) every three or four months. It has got to cost less than Remicade and it will be so much easier to use. No more hours spent in a doctor's office with the infusion slowly dripping into his veins.

How can we get those slow motion bureaucrats at the FDA to step up the approval process?

On the news all I hear is that the FDA is broken because they approve drugs with dangerous side effects like Vioxx and Bextra or that the FDA failed at monitoring faulty production of Heparin in China, but in my book, the real scandal is the horrible delays of revolutionary medicines caused by the FDA's underfunded and under performing bureaucrats.

Paul's "asthma" remains a concern but he is having fewer episodes than a year ago when his undiagnosed Ankylosing Spondylitis caused his rib cage to swell and start to freeze up. Hard to get a breath when your ribs don't move.

Paul's physician charges $6000 each Remicade infusion. Our family insurance is through my wife's job as a teacher. It pays "70%" as it defines 70%--usual and customary--which is their way of lying about covering 70%. They really only cover about 55%. My wife turned in the paperwork for the RemiStart program which is suppose to give us some help. Our physician gave us the paperwork. Hope we get some help. When I still could work and before Paul had any symptoms we never had money worries.

Paul just hummed "The hills are alive with the sound of music." He has not been able to sing or hum for over two years. Up until today the only music he could make was with his lips, teeth and tongue in a series of clicks and buzzes. But just now he was actually able to use his voice box again! Wow! We are so lucky to live in the first time in the history of humans when the effects of autoimmune disease can be reversed a bit. The disease process is no longer inevitably down hill. Now when do we get the real revolution. When do we get one of the forty some proven mouse cures for autoimmune? Ask the FDA commissioner, Andrew C. von Eschenbach .

I went through a couple of months of severe problems with my "intestinal difficulties" and lost about fifteen pounds. My lowest weight 150 lbs a couple of weeks ago was the least I have weighed since I was a high school sophomore.

I seem to have "converted" to an intolerance for yogurt and fresh fruit. I eliminated them and have gained back five pounds. It is tough to get enough vitamin C without fresh fruit, but it is nice to be able to eat again. Without this colitis/anaphylaxis thing I have I am sure I would be obese. So there is a kind of silver lining to the pain and discomfort.

Any way as long as Paul continues to get better, life is good.

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