Update- saw rheumy

Well, my rheumy wants me to increase my imuran to 250 instead of going back up on the prednisone. He is researching quinacrine and dhea to decide what to do about my fatigue level. I am so glad I got in to see him. He listened carefully and didn't ignore me like some doctors in the past have. He even said the quinacraine was a good idea he just has never used it before and wanted to get more info to see if there would be any interactions with any of my other meds and the best dosage. He then said dhea has been used for fatigue too and he wants to look into that as a possibility.

Well, I am worn out and need a nap. I hope others have good news too. It has been a bad news kind of month already.

quinacraine and plaquenil work together and better manage fatigue than either one alone. I have no idea on the dhea I only know if it is otc I can't afford it. the otc stuff comes in such small doses that it requires many many pills to get enough to do any good.

I found it in The Lupus Book by Dr Wallace, 3rd edition pages 216-7. Also U of M is using it for that purpose. It is supposed to begin working within 1 month and the major side effect is yellowing of skin and eyes without liver damage/inflammation. I have been searching for a long time and was re-reading The Lupus Book when I came accross this little piece of information. I need to get down to 5mg or less of prednisone but the dose I feel better at is 40mg which I can't handle for any length of time due to weight gain from water retention. I was searching for a solution to this problem and this just seemed like worth trying. I am willing to try anything at this point. I can't keep sleeping more than I am awake.

P.S. Quinacrine has to be compounded by a compounding pharmacy just in case you were unaware of that fact.

Post Edited (redrose77) : 9/15/2010 6:21:52 PM (GMT-6)

Just wanted to say hi Redrose. You and I have briefly talked about quinacrine. I have been on it about 3 months now, I just saw my doctor yesterday and he said it is used for fatigue and joint aches asssociated with lupus. It has helped me with the joint pain. We are going to increase my dose from 50 mgs to 75.

I am also on the standard dose of plaquinel and am on cellcept and 10 mgs of prednisone along with other meds to control lupus such as propranolol,colchicine, furosemide etc.

I think that it would be worth a try to see if their is improvement for you and its nice you have a doctor who listens to you!

 Its always a struggle to get everything balanced out just right huh!

My labs have been good for months now, Hopefully this will just be a minor setback for you.

I guess we really do have to take things one day at a time.