I've been lurking here on your CP forum for a couple of weeks. I wanted to introduce myself to you all. I'm Barbara and I'm normally on the lupus forum. I've had lupus for 20 years the past 7 years have been really hard. In 2004 I took a medication that had the potential to cause lymphoma or leukemia it was a 4% chance. Well I've got the worse darn luck. I've now got leukemia in addition to my Lupus, and of course I also have Rheumatoid Arthritis and Fibromyalgia. Needless to say I suffer from serious pain. I'm rarely below a 5 out 10 on the pain scale. Most days I go to bed at an 8 out of 10.
I'm on oxycontin twice a day and take demerol for break through pain. I get blood transfusions every 8 weeks or so. I'm currently waiting for my doctors to say it's time to do a bone marrow transplant to try to cure the leukemia. Of course my lupus will complicate the transplant and at the present moment I stand only a 35% chance of living through the transplant. My doctors don't like those odds, so they are waiting until I'm so sick I'm gonna die anyway so then it will be worth the risk. We also need to find me a donor, I was adopted as a child and I have no blood relatives except my 15 yr old daughter. It's been recommended that I do not put her in a position of hoping that she's a match, or if she's a match and I die, according to people who have donated for family the guilt is extreme, that she'll have to deal with I gave Mom my bone marrow and she died.
My question to you all, do you think that the oxycontin is a good choice of long acting pain killer? Is there sometimg else that would work better. I should say that I'm allergic to morphine and I can't take straight morphine. I'm reluctant to go up any higher on my oxy than I'm at. I was on a higher dose and my husband said I was totally wasted all the time. I want to be aware of what I'm doing, and yet I want to have good pain relief. Any suggestions would be greatly appreciated.
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.