I have one of the worse cases of Dermatomyositis that the Drs. have seen. Dermatomyositis can effect your ability to swallow food. From the onset of Dermatomyositis the muscles that allowed me to swallow have been getting worse and worse. I could eat every little (Kim would have to put the meals in to food processors to make baby food), I could barley swallow water without choking, and at night I could not swallow my spit. I had to have a cup by my bed to spit out my spit or I would choke on it (Yes, it was kinda gross).Something had to be done. My weight was dropping very fast (About 120 lbs right now!) and my strength was nothing. We had spoken to the Drs. about a feeding tube, but, as a typical guy, I did not want one. The Drs. told me that if I did not take the feeding tube, I would die.
I had a GI feeding tube. The Drs. inserted a tube from the outside of my belly, that went into the stomach. There was 12" tube that hung from my belly, I had to tuck the tube in my pants. When I ate, I would take liquid food, pour it into a funnel, into the tube, that went into my stomach. NOT FUN, but it was life or death. This was my only nourishment and liquids that I would take in. I cannot tell you how much I missed eating. You find that eating and meals are enjoyment, and entertainment. This was very discouraging for me.
6/15/2005 - First Rituxan infusion
6/22/2005 - Second Rituxan infusion
6/29/2005 - Third Rituxan infusion
7/6/2005 - Last Rituxan infusion
Rixuxan is taken by IV. It is taken 4 times, in four weeks. The only side effects that I had; I felt like I had the flu. I did feel that Rituxan worked, I felt the effects in about 6 weeks time. The first time was the best reaction, the other ones I felt did not work as well.
6/30/2005 - Feeding tube put it.
Hi this is the 4th time I have had Dermatomyositis I go into remission I frist got sick in sept of 1989 last time 1999 I get sores all over muscle pain the frist 3 times bad last time I was in ther hospital for 32 days this time I just got a little muscle pain in upper arms and jaw lots of sores hair falling out but the worse thing is my face this time is red all over that never happen not all red I do prednisome Imuran and methatexate well spell check on that one i have really long, lomg hair everytime I get sick I hate it so much when it falls out and when I get cushings (round face) from the medication. its all messed up you have to have something to drink when you eat or you might choke your head itches I finally found that perscription for the relief of itching ask me if you want to know Katzone007@aol.com I know alot about Dermatomyositis except why my hands stick out straight and hurt so bad any help out there abouit that? thanks Kathy
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