So frustrated and imuran

Good morning everyone. I’m just so frustrated at this point with this disease and my healthcare. I was really looking forward to my last appt with my rheumy. I was hoping that he would start me on something else because he had taken me off the cellcept. It made me so tired and made me feel worse. He increased the pred AGAIN. Now I’m on 6 mg of medrol a day. I was feeling so frustrated and crappy that day in his office and said how I feel like a guinea pig going for test after test. He didn’t like that and gave me an attitude. Now he’s talking about trying imuran. Has anyone tried it? Does it work well? I’m so sensitive to these meds.I just want to feel better. I feel like a cow because of the pred. My face is so red. It’s so embarrassing. When I had a rash over the summer from the sun, the derm had it tested and they felt that it was positive for lupus. He asked for the actual slides and had their derm look at it and said they didn’t feel it was positive. Then he tells me to have the rash looked at to see if they think it’s positive for lupus. Does he not remember we just went through this? And what’s the point if he’s just going to contradict it? Do I? Don’t i? I don’t know anymore! Should I go somewhere else and get reevaluated? I’ve been seeing him for years now and I’m frustrated at this point.

If you don’t feel comfortable with your rheumy, I’d definitely find one you like because you’ll be seeing them a lot to monitor your disease. I’m on Imuran and I haven’t had any side effects, I’m also on azathiroprine, and prednisone and pain meds as well luckily I can handle the drugs!! I was on methotrexate first but liver enzymes went to high. And I also have benlysta infusions every month. So far my disease has only improved a tad that’s Wat the blood work says??? I’m still hopefull that time with all this treatment will help!! I’m also very lucky too have a great rheumy!! I’m so thankful for that because I read so many horror stories!! Keep your head up, as hard as that is!!

I’ve been very happy with him all along. I guess I just feel like I’m at a standstill right now.

Unfortunate for us but our illness doesn't give us many choices So easy to get frustrated with our doctors when it is really the disease that is frustrating.

I had trouble with Imuran, kept running fevers. Just keep watch if you take it.

I had to stop Imuran due to severe nausea. I tried taking it different times of the day, with food but nothing helped. I also ran a low grade fever all the time…

I have been on Imuran (generic is azathiroprin) for over ten years. I combine it with prednisone. I started Imuran because of an autoimmune hepatitis in my liver. Over the years I have added more and more autoimmune diseases. About a year ago, I was in a lot of pain although the liver was behaving. My rheumy upped my dose of Imuran and prednisone. So I take 150 mg of Imuran (azathiroprin) and 10 mg of prednisone daily. My pain has been under control. Once in a while I'll have a day of achy joints but not like before. What I do have trouble with is the extreme fatigue. But I am taking 16 meds a day and almost all say they can cause fatigue. So, I don't know whether the fatigue I deal with and really affects my life is from lupus or meds or both. That I can't seem to get under control. I have the prednisone face but am not aware of any side effects from Imuran. I've tried other meds for pain and react to them so negatively that this seems to be the combination that works for me. Hope this helps.

I’ve been on Imuran for about six months now. I haven’t had any issues with it. It’s been really helpful in controlling my last flare. I know it’s frustrating. I often ask my rheumy questions that she just doesn’t have answers. I hope you will get some answers and start to feel better soon.

Im also taking Imuran along with Pred trying to come off of the Pred altogether which has never been apart of my treatment. So a new med for my Lupus is new and scary for me . I havent been on the Imuran a year yet but so far I havent had any problems. Just the usual achyness which may be a little more than it has been in the past. I do experience extreme fatigue more often than I use to since Ive been taking the Imuran. I do know the feeling of being treated like a guinea pig. That feeling brought on an extreme feeling of frustration. I also wanted to change doctors. I have to remember that Lupus makes me "CRAZY" sometimes. No matter what the focus is health, good health, and better health. Im sorry your feeling yukky right now and I hope that you get better and feel better real soon.

I have taken Imuran (azathioprine) for the last 14 years because I also have autoimmune hepatitis. It can upset your stomach. What my doctor prescribed was Zantac (ranitidine). I take it a half hour and eat something before downing any meds. There are other acid control drugs available. If I don't take this my the drugs ricochet.

Ranitidine is available at Costco for an affordable price. I take 300 mg a.m. and p.m. While this is available OTC, advise your doc. He may want to prescribe a different drug for this.

It's a bit of a "krap shoot" to determine what medications we have to take. When the doctor changes your meds he/she goes by what you say and the blood tests. If you can't handle a med, just let your doc know. Plus, you don't have to take it.

You got to hold on.

I would go get a new rheumy doc if you can. I'm ready to do that myself. Second and even third opinions can be worth it! Good luck to you my friend.