Saturday, May 13, 2006

Oooh, Remicade...

So, I've been on Remicade for a little while now. I've had three treatments, and so far, the results have been less than stellar. I know that a lot of people have found this to be a miracle drug, but I'm still waiting for the miracle. And waiting...
I was originally really worried that I wouldn't tolerate the medication at all, and had read copious horror stories of bad reactions when first recieving the transfusion, but I tolerated it ok. I mean, it's 4 hours in the hospital with a needle in your arm, but I'm not needlephobic. Still. It's a very large needle, and actually is quite painful, but worth it. Or is it? I just don't know. The stuff is "liquid gold" or called that, I suppose because it costs more than gold, on a weight basis. And I do feel markedly better for a week or so after the treatment, but then I go steadily downhill.

And this flare is so different from previous flares. So much more joint pain. The kind where I can't get off the sofa and will occasionally cry because I just wish someone could get me a cup of tea or something...I do have painkillers, but they have their own special side effects, and so unless I'm in total agony, I try to not take them.

Knitting helps. Knitting helps everything. Especially lace patterns, where I know I really have to pay attention to what I'm doing. If I'm knitting, I find it harder to pay attention to the pain, to pay attention to the grief. So my house has gone to pot, and my knitting is improving, and I'm still waiting for the remicade to kick in.

Fourth treatment coming soon, so we'll see how that one goes. Fingers crossed.



Blogger mf said...

you should get relief almost immediately wiht the remicade! (if it's a true flare of course) so are you on the every 6 weeks yet? premeds Talk with your DR about taking the pred the day before/after and zyrtex the morning of to get into your system. minutes before doesn't give it a chance to get into you. that joint pain and stuff can very well be a side effect from remicade also an indication that the pre meds your on aren't working for you....ttyl with more info
Hope your feeling better soon.. yes it can be your miracle drug too! Keep it up!!

6:50 AM  
Blogger Annie said...

I can't take prednisone at all- I react really badly to it, unfortunately. But they're upping me to 10 mg, and adding 6MP, so we'll see... fingers crossed!

10:06 PM  
Blogger mf said...

hope your feeling better this week. I'm heading up for mine in a few hours

6:37 AM  

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