What's with this Imuran?

**renidrag** · 05-15-2010, 01:42 AM

After remisssion was decreed about a month or so ago, I was so looking forward to getting off the Cyclophosphamide. Imuran was the answer and I started it ten days ago. I spent the last three in the hospital with coughing spells w/ sputum, fever, chills, aches and total muscle spasms throughout my body. No warning other than the fever would come and go. At 2 one afternoon temp was 102.2 F. Decided to go to hospital, arrived at 101.1 F. In ER (which takes a long time) at 97.7F. By Seven pm it was back to 102.8 and the shakes had started. After three days, I am off Imuran, Bactrim (which I apparently was supposed to be off anyway) and am keeping the fever at bay with Tylenol until the Imuran is out of my system. Does anyone have any input? Any of the same side effects? Dr is talking about restarting Imuran and see what happens but I would like to know of a couple of alternatives if possible. Thank you all for your help, and by the way. To keep all my nagging friends happy I have a June 30 appt. with Dr. John Stone MGH. Wegener's Specialist and Rheumy. also Sangye, my Infectious Disease Physician worked with Stone at JHU years ago.

**DEE** · 05-15-2010, 02:27 AM

hi renidrag ive to have been given the indication that i could be changed to Imuran after ctx and infact was looking up this morning on internet so like you would be glad of any information from anyone that has or is using it as the information sheets only give it could happen which as you you know is notthe same
hope you get the answers you need
take care of you DEEx

**Sangye** · 05-15-2010, 02:30 AM

Dr Stone is a great Wegs doc-- you'll have excellent care. Thank you for finding him so I can take you off that nagging list.

I've never been on imuran so I don't know about its side effects. Did they culture your sputum? Any time you're coughing stuff up it's a good idea to get it tested. I don't know if restarting the imuran is a good idea or not. Maybe you had a flu or something unrelated to it, or maybe it was a reaction. I hope others with imuran experience can help you decide what to do.

You may want to see if Dr Stone has an earlier appt. I'm sure he's booked but there are always cancellations.

**elephant** · 05-15-2010, 03:54 AM

Reindrag, same thing happened to me when I was on Imuran.....the thought was allergic/adverse reaction, flu (not likely), infection ruled out, wegeners disease flare ???? I was in the hospital for three days. My Rhuemy wanted me back on the Imuran, but the pharmacist really thought I had a reaction to the Imuran. So I told my local Rhuemy "NO!"
Yes I had a temp of 102 that would come and go for a couple of days and flu like symptoms, chest/back pain, vomiting and then passed out in the ER.
So that is how I got on Cellcept.

**renidrag** · 05-15-2010, 08:54 AM

As usual thank you. I am going to investigate cellcept. After i posted I found out my primary has not as yet forwarded my referral to MGH. I am really **************ed.

**andrew** · 05-15-2010, 09:41 AM

Hey renidrag, can't add anything more to the above except to say hope you get better soon!

**Luce** · 05-15-2010, 09:30 PM

Hi, I switched to Imuran after ctx but it really was no good for me, I only stayed on it about 6 weeks because the WG just broke right through and I became so severely anaemic the side of my lips cracked into huge sores.
I was also told to stay on Bactrim while taking Imuran but after reading the info leaflet with Imuran the two can react when taken together. So I explained this to the doctors and they took me off the Bactrim.
I did another 3 months back on the ctx and then switched to Cellcept which was much more agreeable and did a far better job of holding back the WG.

**Sangye** · 05-15-2010, 11:54 PM

Dale's experience is a good example of why we each need a Wegs specialist involved from the beginning-- even if things are proceeding well. One little bump and a regular rheumy doesn't know what to do. Even those in remission should look for a Wegs doc. That's my nag for the day. For the moment.