Becky's picture

short life of the drug?

Submitted by Becky on Sun, 10/10/2004 - 12:37pm.

I don't really understand what you mean by that. I was on Remicade for about six months because 6mp made my WBC go really low. It was great and had no side effects on me, and got me off of steroids. My veins really suck though, and I had had quite a few IVs throughout life, so by the time I was in remission my hand and arm veins were too scarred to take an IV ever again. I would have needed a central line (which I will also need if I ever have to have an IV for any reason), and since that carries a risk of infection, and so does Remicade, my GI said that I would be safer to go off it unless I start to have bad symptoms again. Most people stay on it for maintenance, but most people have better veins than I do. The only symptoms I have now are fatigue, mouth ulcers and joint pains, plus a slightly elevated sed rate-- as good as I ever get. If you, unlike me, can tolerate 6mp, it's usually considered a good idea to stay on it when you start Remi, because it makes Remi work better and decreases your chances of getting an allergy to it.

How long have you been on 6mp? It can take up to 6 months to work fully. Also some people who don't respond to it, do respond to azathioprine, even though they are pretty much the same thing. So if you are dead set against taking Remicade unless you absolutely have to, you still have options.

I don't really know what you mean by holistic? Probiotics can be useful in tandem with your other meds. You can also keep a food/ lifestyle diary to see what sort of triggers you might have.

For more general info on Remi you can poke around on www.ccfa.org, as well as on www.remicade.com, which is biased of course but is up-to-date. For more personal stories, go to www.ibdsucks.com, register (you can use a fake name and e-mail address if that makes you more comfortable), then click on "pharmaceutical drugs." You will see a link to "Remicade survey" which is a list of people's personal stories with Remicade, and another to something like "Remicade and Humira" which is more of a discussion thread. I think there is also a Remicade yahoo group but I don't know the url and I unsubscribed after I went off it.

If you think you might need it, do whatever you can to start saving cash for the co-pays. Get a Health Savings Account or something if you possibly can. That stuff is expensive. Also take a blanket or poncho to the infusion centers, because Remi is refrigerated so you'll get cold during the infusion and you can't really put on a jacket over an IV.

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