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Regular Member

Date Joined Mar 2007
Total Posts : 194
   Posted 8/4/2009 7:53 PM (GMT -6)   
I have been gone for quiet a while as I had a flare that landed me in the hospital for 2 weeks. I came home on TPN and VNA service. During the flare I had my gallbladder removed as well and low and behold it was inflamed. I had Crohn's disease and Lupus. They started me on 150 mgs of Imuran and I was deathly ill on it. Nausea is not even enough to describe how sick I felt on it. Dr. told me Imuran does not tend to cause violent reactions. I lost 85% of my hair and Dr. was concernced so he sent me to a Derm. She imformed me I have a condition caused by severe trauma/illness and will continue for up to 6months but my hair will grow back.
I stopped the Imuran as I could no longer tolerate the side effects. I have been off for 4 weeks and my disease is already acting up. My Dr. is away on vacation and we had agreed to begin Mtx injections in the next month or so. I can not wait that long as I am scared of what might go wrong. Dr. on call wants me to try Imuran again. I do have nausea on a small level I believe may be from missing my gallbladder so the thought is the nausea I had may be a combination of things and not all Imuran related. I agreed to start it  but  I am nervous. Mtx is not used in Lupus and IBD as often as Imuran ( so I am told) and this is why the want me to stick it out.
Tell me your experiences on Imuran? I hope I am not just a big baby. Dr. told me I seem to be "drug sensitive". uffffffffff I cant win!

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 8/4/2009 10:58 PM (GMT -6)   
HI Chaya,
So sorry to hear about your recent hospital stay.  That is so scary to go through. I also lost most of my hair after a major trauma bacvk in 2007.  I lost my hair over a period of about 6 months.  I thought I was going to be bald.... It definitely grows back wink .
Nausea is a side effect of Imuran, but it takes about 3 weeks for your body to build up the drug and cause a reaction.  Unless you're allergic to it.  some people have a lot of issues with the side effects and others (like me) it works VERY well with little to no effects.  I guess trying the MTX is a good alternative.  I hope it works great for you.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 8/4/2009 11:23 PM (GMT -6)   
I can only tell you about my experiance with Imuran. I had no side effects at all, none. But even after a year, I also had no good effects! So for me it was uneventful.

However, some people get really good results with Imuran.

My doctor wanted to try Cellcept before MTX (I think as he'd seen studies where it helped with cognitive disorders, which was my biggest problem at the time). Fortunitely, the Cellcept worked wonders and really gave me back my brain... I was able to stop it and not loose any ground. Cellcept did thin my hair quite a bit, but it has since grown back.

Everyone with lupus is different, and every doctor has their own idea as to what sequence of meds to try. (And it is all trial & error!)

I hope you find a good combination that helps you out quickly without nausea.

about the gallbladder...I had a fair amount of nausea before I had my inflamed gallbladder out. I have had no issues since, but a lot of people report problems when they eat something with a lot of fat content, or something that is very rich.

Hope that helps a little
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 8/5/2009 6:57 AM (GMT -6)   
Hey there! I was on Imuran for a little over a year and was the same as good or bad side effects except low blood counts. I too then moved to Cellcept and it has helped a little! Will be moving to something else next Friday! One of my friends took Imuran and they had a horrible reaction to it. So I think it just depends on your body and how it decided to take it!



Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Lupron, Zofran, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...


Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 8/5/2009 9:20 AM (GMT -6)   
Most patients tolerate imuran well over long periods of use.  However, some patients do not and typically the reaction to the med is almost immediate.  Sounds like you are one whose body does not tolerate it.
I have been on it for almost 4 years and had no problems for the first 18 months.  Then it started to hit my blood...reducing wbc, rbc and platelets.  My doc reduced it from 150 to 50 and things stabilized until this summer when it started to hit my blood again.  I have reduced to 25mg and will probably be off completely by the fall.  My disease appears to be in remission and the hope is that I can get off all controlling meds soon.
What is your doctor suggesting as a substitute? 
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
Remain optimistic and you can overcome the odds.

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 8/5/2009 9:42 AM (GMT -6)   
I tried Imuran last fall. I am also "drug sensitive". I took the Imuran as prescribed for 10 days and had a SEVERE reaction. Temp of 104, stabbing head and back pain and swelling along my spinal cord. Docs took me off the Imuran, but it was still several days before I could begin to function somewhat normally (?), and about 2 weeks before I had no lingering effects. They still have no idea why I reacted so bizarrely, but I have been told to never try Imuran, again.
I tried generic CellCept in July and had the more typical allergic reaction (hives, swelling, itching), so I discontinued it. But in the brief time I was on CellCept, it worked so much better than the Imuran ever did! Right now, I am very gradually reintroducing the generic CellCept to see if I can adjust to it. So far, so good, though it has only been a few days.
I hope you find the right combo of meds to help. This disease is so frustrating, add to that the worry over potential side effects and reactions of the various meds and it is a waking nightmare!
Good Luck!
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.

Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
7-11-09 Started CellCept - so far it's like I've been given my life back!
7-21-09 Last day of CellCept for now - allergic reaction - darn - and it was working!

Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

New Member

Date Joined Aug 2009
Total Posts : 2
   Posted 8/5/2009 10:30 AM (GMT -6)   
HI Chaya,

I am relatively new to the whole lupus treatment scene, but I was put on Imuran this year to try to help me wean off prednisone. I didn't have any reaction for about 3 weeks after beginning it, but then became violently sick very suddenly one night -- high fever, body aches that felt like the flu, nausea and vomiting, headache, chills, then very low blood pressure and high heart rate. I had to be hospitalized and given IV fluids. They thought it was some kind of infection and tested me for everything from swine flu to MRSA in the hospital. It was all negative, but they gave me IV antibiotics just in case. Then when I got home I re-started the Imuran and had the same reaction within hours, and had to be taken to the hospital again, this time in an ambulance. Same symptoms. My rheumy told me I had what is called a SIRS reaction to Imuran (Systemic Inflammatory Response) and that I should never take it again. I have heard of other people who have had this as well.

I started another immunosupressant, Cellcept, about a month ago and (fingers crossed) have not had any allergic reaction to it.

I don't know if your symptoms were from the Imuran but would hate for you to go through another bad reaction to it again if it was SIRS! I guess you can talk with your doc about it.

Best wishes to you in healing from your surgery, and starting new meds.

Veteran Member

Date Joined Mar 2005
Total Posts : 589
   Posted 8/14/2009 8:28 PM (GMT -6)   
Hi!  I am also a Crohnie and Lupus patient - I have been on Immuran many times, first time I was one it for 3 years and had no problem until I got multiple sinus infections and had to go off, was in remission for almost 2 years till a Crohn's flare.
Went back on Immuran last fall and had serious issues with it - I started out at 50mg with no major problems (tiredness, some joint/back pain) after 6 weeks went up to 100mg (my full dose) - I got massive migraines, my dr. backed me down to 75mg and stayed there for 4 weeks and then went up to 100mg - no real problems phsyically, just mentally - I felt like I had massive PMS - I had hot flashes, insomnia, depression, etc. 
My GI yanked it and of course I flared about 6 weeks later.  Needless to say I was not doing very well - went on Pred and Entocort and after the discussion with my Rheumy my GI prescribed MTX - Injection.  I have been on it for a month now and am feeling MUCH better.  I have a few side effects from the MTX (some headaches, nausea the day after the injection and feel a little hungover that next day) but my bathroom trips, bleeding and joint pain has pretty much disappeared - I am honestly shocked at how much better and how much faster I have seen results.
I will start tapering off my 5mg of Pred and the 9mg of Entocort this week! 
Questions let me k now and I will be happy to answer as I can.
Diagnosed with Lupus - April 2002
Diagnosed with Crohn's Disease (and all the lovely things that come with it) - January 2003 (problems since early 1990)
Fibromyalgia 2005 
Normal Meds:  Ambian 10mg, Flexeril 10mg as needed, Plaquenil 400mg, MTX 25mg Injection, Probiotics
"Extras" Right Now for Crohn's Flare:  Pred 5mg, Entocort 9mg

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