View Full Version : What's with this Imuran?

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.

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

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. :D

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.

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.

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.

05-15-2010, 09:41 AM
Hey renidrag, can't add anything more to the above except to say hope you get better soon!

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.

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. :D

05-16-2010, 09:02 AM
You are so right Sangye. I am thinking about seeing Ulrich Specks at Mayo.

05-16-2010, 12:17 PM
I hope you do, Phil. I'd sure like to take you off my nagging list. :D

05-17-2010, 12:37 PM
I started Imuran after cytoxin and have had no problems. I have noticed some achiness in the joints but that seems to follow my pred decreases , lasts the first week to 10 days than subsides. Never completly goes away but not even close to how I felt at diagnosis.

I had been on bactrim also, but the Dr. told me to stop it when I started Imuran.

05-17-2010, 01:22 PM
Julia, do you still have joint pain? I had sever joint pain and once I started the prednisone and other immunosuppressants it went away. If you still have pain it might mean Imuran is not controlling it. Or they might have to increase it. How much Imuran are you on?

05-17-2010, 02:37 PM
When I initally was dx had cytoxin/pred. Pain went away.
The joint pain started about 6 weeks after I started imuran, I was also decreasing pred and I think when I hit 20 mg is when it showed.
I really think it is related to decreasing the pred. It is not constant, usually when I stand after sitting for awhile. When I wake in the morning (or afternoon from a nap).
Each time I decrease the pred it is more noticable than subsides after a week -10 days. The Dr. said I can take tylenol but it really is not that bad.
Joint pain pre dx was 8.5 on a scale of 10. This joint pain is a 1.5 enough to know it is there but not enough to have great concern over.

I am taking 150 mg imuran
10 mg pred

05-17-2010, 09:29 PM
Julia, the Imuran is a good dose. That is good that you are having less pain. Once you go below prednisone 10 mg, that's when you need to really listen to your body. That was a lesson I had to learn. Do you see a Wegeners specialist? Your close to Mayo.

05-18-2010, 12:20 AM
Ha! Elephant slipped that nag in so I don't have to!

Julia, it does sound like the joint pain is related to the pred since it subsides. I'm experiencing the same thing as I taper pred. I've had severe joint pain from Wegs and it doesn't feel like it at all. Totally different quality. Just go reaaaally slow on the pred taper so you don't wake up the Wegs. He's cranky when he wakes up.

05-18-2010, 05:27 AM

Thank you for the advice. I know now that I am at 10 it should go very slow. I just started 10 so I will not decrease until my next visit in June. I have read many of yours(and others) entries regarding pred and they have been very informative.

If I had the money and you the energy and time I would pay you to come to my office visits.

05-18-2010, 06:45 AM
LOL-- That's very nice of you! You'd have to keep poking me to stay awake--you might get sore elbows after awhile. :D

05-19-2010, 03:17 PM
I'm on imuran for the treatment of wg. I'm now on 100 mg a day. The first month, I would take it at night instead of the am because it made me fall asleep. That however, was after the violent throwing up for a straight thirty mins to an hour. I felt horrible every time I took it until about two months. I found that honey, if taken with it, kept me from throwing up. I've been on the full dose since April first and after a month o the full dose my bloodwork which previously was close to being in range was now as bad as last October. Because of the imuran, I developed a horrible sinus infection. Been on three diff antibiotics for over a month and a half. Still fighting it. Not sure if your symptoms are from it but mine subsided after two months and I don't have a problem taking it now. I hope u feel better soon.

05-19-2010, 11:41 PM
Firecracker, sounds like a wegeners flare to me. Your sinus infection should of improved by now. Did they put you on Levaquin? That is a very strong antibiotic.

05-20-2010, 12:43 AM
Firecracker, sounds like a wegeners flare to me. Your sinus infection should of improved by now. Did they put you on Levaquin? That is a very strong antibiotic.
I was told being on the Imuran is most likely the cause of the delay in getting rid of the infection. I cant take levaquin or most of the antibiotics they wanted to put me on. I took doxycycline and cephalexin together then they changed me to clindamycin which helped in three days but it just keeps clearing up for a day or so then comes back. They may admit me and put me on iv antiobiotics. my ent did numerous cultures on different appts and nothing came back. I put the stuff under my microscope and saw mold so I have been using my intraconazole rinse and taking the antibiotics to kind of keep a balance. My workplace has mold. I can tell because the minute i get there, my face burns inside and that was how it was at my old workplace that osha found mold in. I always was a mess there and lately, i have been at my current building.. just not as bad. I forgot to mention about the imuran. Since i have been on it, the bottoms of my feet hurt really bad to stand or walk. They feel like i have been standing or walking all day when i have not been at all. A lot of the docs said it was from the 40lb weight gain from the prednisone. well i have been lowered to 10mg of pred since april and lost a ton of water weight, stil have the pain in my feet so... imuran it is. Usually when the wg flares, I get tons of blood and clots coming out of my nose and sinuses...whats left of them. Ive only had a little bit of that. mainly just that nasty green from the infection i had/have. it seems better then i get that pressure .. like i had yesterday and today.. yet again. calling my ent today and i see my rheum tomorrow to get my new blood test results.

05-20-2010, 01:09 AM
Firecracker it sounds like Wegs to me too. I also think the foot pain is Wegs. That's exactly the kind of pain I get with active Wegs. I think the imuran isn't strong enough and Wegs is pushing through it. You may have a sinus infection on top of it, but your description of only temporary relief with antibiotics sure sounds like Wegs.

05-20-2010, 01:34 AM
Firecracker, I agree with Sangye about the foot pain and the imuran not being strong enough. I feel your pain, I am dealing with the sinus issue myself, it sucks.

05-20-2010, 02:00 AM
I agree on the foot pain, firecracker. Now that I am being treated with mtx, my foot pain is going away pretty agressively, in line with the disappearance of nasal crusting.

05-20-2010, 02:56 AM
I agree about the foot pain, as well. Painful walking was the symptom that started causing me such drastic life changes. It disappeared once I started treatment for Wegs. - methotrexate at that time.

06-03-2010, 06:39 AM
Thanks all. The doc up'd my imuran to 125mg from 100mg and the prednisone down to 9mg a day(down one mg). The sinus infection is finally gone after two months. My pr3 went up from 46 to 48 but all the rest of my numbers are much better and i only have a few out of normal range. I am wondering if any women here with wg notice a dramatic difference every month during or around our favorite time of the month. The inside of my nose is horribly worse and I get really horrible pain the week before in my face/sinus. It happens every single month. I am going to my gyn next week to get my hormone levels checked but I am curious if anyone else notices this same thing happening to them.

06-03-2010, 08:08 AM
Firecracker, I had a total hysterectomy five years ago, but when my " special friend showed up in a red dress", I noticed arthritic pain in one finger...once my friend left the arthritis in that one joint left. Weird!