Myasthenia Gravis News Forums Forums Healthcare and Treatments Imuran (Azathioprine) and Side Effects

  • Imuran (Azathioprine) and Side Effects

    Posted by Charlie on August 19, 2022 at 6:08 am

    Hi, all. I will likely be starting imuran very soon (if my bloodwork comes back good) and while side effects lists are readily available, I was curious if anyone would be willing to share their stories with how imuran went for them.

    Geoff Verschoor replied 1 year, 9 months ago 28 Members · 34 Replies
  • 34 Replies
  • Gregory E Lucier

    Member
    August 19, 2022 at 4:34 pm

    I was put on Imuran but broke out in a rash all over my body with intense itching that kept me awake at night.
    Discontinued Imuran started to clear up rash and put on Cellcept
    with the same side effects. So I cannot tolerate either of these drugs.

    • Geoff Verschoor

      Member
      September 29, 2022 at 9:47 am

      I was on Imuran 150mg per day for about three years.  It worked well for me, reducing my MG symptoms considerably, with no noticeable side effects.  Then my blood results began to show abnormalities resembling those of leukemia.  After a big scare, the blood symptoms were definitively linked to the Imuran.  I had to stop immediately, and my blood returned to normal after a few months.  My neurologist and I have battled to find a workable alternative and will try cellcept shortly.

  • Andy

    Member
    August 19, 2022 at 7:12 pm

    I had the Exact same reaction as Gregory. The all over Body Rash took 6 months and many Dermatitis appointments to clear. I was put on Cellcept, and Sinus Bleeding. I am considered Refractory.

  • Robert Perrou

    Member
    August 19, 2022 at 7:17 pm

    I have been lucky and have not experienced the side effects that Gregory and Andy have. I have been on Imuran for three years at 200mg daily.

  • David S

    Member
    August 19, 2022 at 7:34 pm

    I have been on 150mg/day for about 2 years.  No side effects.

    Scott

  • Marguerite Thibeau

    Member
    August 19, 2022 at 8:15 pm

    Imuran and Cellcept are 2 of the most widely used and tolerated meds. I have trouble with many meds, from cosmetics to heart meds so it’s no surprise I had trouble with these, unfortunately. They are older, well tolerated, solid drugs with a long track record. Imuran caused a bout of pancreatitis. The doctors were wheeling me out to go to surgery and I asked if Imuran caused the pain. Very dramatic, but they checked and admitted me for observation and the pain went away. So I had to switch to infusions which are much less convenient. Imuran most likely will work well for you and spare you infusions. Good luck, let us know how it goes.
    Marge

  • Robin J Hughes

    Member
    August 19, 2022 at 8:22 pm

    I have been on 150mg of azathioprine for almost 8 years. It did take almost 10 months to affect mg but it does work. My neurologist monitors my liver functions which occasionally become elevated but then go back to normal. I’ve had no other side effects.

  • Jennie Morris

    Member
    August 19, 2022 at 8:47 pm

    I was on Imuran for about 2 years. Initially, I did fine and it helped. But my MG progressed and I developed a tolerance so my neurologist increased my dosage. My blood work showed severe decreased RBC and ultimately I developed severe anemia. I can no longer take it. All immunosuppressants now cause anemia.

    • Alan Bridle

      Member
      August 21, 2022 at 3:11 am

      As I am now on Imuran after Cellcept decreased my RBC too  much. I am interested to know wihch MG symptoms Imuran helped you with … all of them or just some?  So far (6 months in) I have seen few side effects (compared to what others describe here) but I also can’t yet point to any obvious  improvement,

    • Alan Bridle

      Member
      August 21, 2022 at 3:17 am

      I am 6 months into taking Imuran and not seeing either side effects or much improvement –  so I am interested to know what symptoms you found it helped with.

      • Jennie Morris

        Member
        September 14, 2022 at 10:08 pm

        All my symptoms. I have gMG with severe throat issues. But when I could take Imuran, it helped in all areas well enough to be physically active.

      • Alan Bridle

        Member
        September 15, 2022 at 12:20 am

        Thanks for the feedback, Jennie.   It seems from other comments here that there is a lot of variation from person to person – like everything else in MG –  but my blood work says I am doing better on Imuran than I did on Cellcept.  Sso I am keeping my fingers crossed about seeing improvement when it has had longer to kick in.  It is good to hear from folks like you who it has helped!

  • Dan R

    Member
    August 19, 2022 at 8:51 pm

    I took it for four weeks and struggled immensely. It turned it out it was elevating my liver enzyme levels tremendously.

    My suggestion if you start the drug: get weekly blood tests in the early days. My neurologist told me I could wait a month before getting a test. In retrospect, I should have listened to my body and had my blood checked earlier.

    I’ve been off it now for three weeks and feel much better. Only taking mestinon and prednisone, and waiting for the effects of a thymectomy earlier this year to take hold.

    • Alan Bridle

      Member
      September 15, 2022 at 12:26 am

      I now understand why my neurologist ordered frequent blood tests at first when I went on Imuran.  I looks like I have been luckier, and I am doing better on Imuran.  One of the hardest things about MG seems to be how everyone’s case can be so different, so a lot of trial (and error) is involved in our treatments, even with very good docs on our cases.  Good luck with your treatments going forward!

  • Celeste M Matthews

    Member
    August 19, 2022 at 11:38 pm

    Both Imuran and Cellcept caused me all sorts of problems.

    High blood pressure, High blood glucose, Extreme weight gain, water retention, and the best one, my liver doubled in size. Yes the doctors should have kept up with my liver enzymes. They did not. They did not do anything except for 3 month checkups. I went through 4 neurologists before 1 referred me to Major Teaching Hospital.

    I am very happy with my neurologist. She does a very good exam and has done a lot of tests. I am being treated with mestinon alone.

    Now, she is wanting me to go back on those same drugs that almost killed me. I am only getting exams every six months. My primary care physician sends off blood work occasionally.

    I was doing ok until I had major surgery. Now I am weak and it sucks.

     

     

  • Debbie Butler

    Member
    August 20, 2022 at 1:20 am

    I have been on Imuran for almost 30 years … started at 200mg a day, dropped to 150mg a day after a couple of years and for the last 28 years am taking 100mg a day.  No problems at all.  I do have blood work done every 4 months.

  • Monica

    Member
    August 20, 2022 at 5:46 pm

    I was on Imuran a long time ago and it did not help me put me on cellcept and my memory was going so I went off that now on soliris doing much better.

     

  • David Holten

    Member
    August 20, 2022 at 6:25 pm

    I was on Azathioprine 50MG/twice a day. I was having some minor leg weakness & my neurologist doubled my dosage. Then I started getting monthly infections, mostly UTI. Dosage was reduced back & I haven’t had an infection since. I’d rather deal with a little leg weakness than monthly doctor visits to get antibiotics.

  • FrancisW

    Member
    August 21, 2022 at 1:06 pm

    I am late onset – age 63 – MG.  I’ve been taking Imuran for 1 year now.  No meaningful side effects – nothing I notice.  Takes a long time to impact MG.    Took 4 pills Imuran & 4 pills Mestinon in the beginning.  Plus added my own herbal supplements to reduce inflammation in my system.  Anyway, now down to 1 pill Mestinon every few days and 3 pill Imuran.   Although not in remission,  my quality  of life has improved considerably.   Good luck.

  • Amirbz

    Member
    August 22, 2022 at 1:05 am

    Dear friends,  for me with more than 2 years of OMG, I’ll appreciate it very much and it will be very helpful if you will add what kind of MG you are talking about: GMG, OMG or any other rare sort from this family.

  • Ari Maayan

    Member
    August 22, 2022 at 4:29 pm

    I am a REAL late onset MG person, 73. My first symptoms were identical to a full blown stroke with every symptom that entails. I was hospitalized in a major teaching hospital in Las Vegas and had 5 neurologists exam me and they couldn’t figure out what was going on with me. I have been on azathioprine for 11 months and I haven’t had a single problem. Of course my RBC count is low but that’s to be expected. I was on a well-greased downhill slide before I started azathioprine. I am on 200mg a day. Also on 240 mg a day of mestinon and 45 mg of IV/IG once a month.

  • Sue

    Member
    August 22, 2022 at 7:26 pm

    I have GMG, diagnosed 10/2018;  I take 100/mg day Imuran, 240/mg day Mestonin and 5/mg day prednisone.  I also yet yearly Rituxin infusions. I have muscle weakness and pain in joints.  I also notice slight hair loss but it always grows back in.

  • Douglas F Young

    Member
    August 23, 2022 at 3:05 am

    I have GMG, age 76 diagnosed at 64. Imuran made me intolerably sick in about 10 days. I actually checked myself into the hospital thinking I was having a heart attack,  my arrhythmia was so intense.  Nope, just the Imuran. Quit that and within 24 hours just fine. Cellcept now for five years without any side effects. Down to .5 mg prednisone plus 240mg mestinon and semimonthly Soliris. Doing very well.

    The takeaway? With MG Everybody’s different.

  • John G Fay

    Member
    August 23, 2022 at 8:23 pm

    I was given Azathioprine after a period of time on 20mg of prednisone and 60mg/day of mestinon. My dosing increased every two weeks and after 5or 6 weeks I went to the ER with a fever of 105.9.  I was in for three days and had every culture, blood tests, scans and tests available.  They found no infection and determined it was the Azathioprine.  I have been on 2000mg of Cellcept since then. I am late onset as well (age 65 three years ago)

    • Ari Maayan

      Member
      August 23, 2022 at 8:27 pm

      Hope you are doing well now John. Different people have different kinds of responses to almost every drug that we in the MG community. I have no negative response to my 200mg a day of azathioprine. Good luck!!!

  • Lester Shaw

    Member
    August 24, 2022 at 10:09 pm

    I am 77 years old and have MG with MUSK antibody. I have been on 150 mg of Imuran for eight years and the only side effect is a little fatigue as the day goes by.

    when I was first diagnosed they had me on Mestinon and prednisone which were dropped off after about 18 months, now only Imuran.

  • Lovina Wolgamott

    Member
    August 26, 2022 at 7:17 pm

    I have taken Imuran for almost 2 years. I was on Humira for several years for RA and then developed MG so I was pulled. I take Imuran and have finally got down to 5 mg of prednisone for my MG and have not had any side effects from it. Good luck

  • Deleted User

    Deleted User
    September 16, 2022 at 7:24 pm

    My wife (LRP4 MG) took Imuran and developed severe anemia. It inhibits RBC production in the bone marrow from what I read. They monitored her hemoglobin where “normal” is 12 or so. When it dropped under 10 then under 9 they started taking blood tests more often. When she got to under 7 they gave her transfusions. She had several which was concerning from a safety point but also she was very tired all the time from low RBC. When she took Rituxan and it helped her immediately they took her off of all other MG meds within 2-3 months including Imuran. Her hemoglobin went straight back to normal very quickly and has remained there ever since. Just be aware that you can get anemic from Imuran and test for it.

    • Ari Maayan

      Member
      September 16, 2022 at 7:51 pm

      Thanks for the warning Louis!!!

  • Ari Maayan

    Member
    September 22, 2022 at 1:30 am

    <p style=”text-align: left;”>Audrey, Imuran and Mestinon are two completely different types of drugs and replacing one with the other for the purpose of creating the same result is not going to happen. Mestinon is fur muscle weakness cause by the breakdown of acetylcholine, a neurotransmitter needed to make muscles function. Imuran is an immunosuppressant drug. It suppresses antibodies, including, but unfortunately not restricted to those that would otherwise take up the acetylcholine receptors on the muscle tissue. Two different drugs that act in completely different ways to help us poor devils with MG. But, one doesn’t replace the other and I am sure that your mother’s neurologist wasn’t intending that. But I certainly hope that, whatever is prescribed for her, that she tolerate it well and it helps her immensely.</p>

  • Leanne

    Member
    September 22, 2022 at 8:24 pm

    Hi.  I was on Imuran for over 30 years and was warned about the side effects.  It was great to keep my Mg under control but the later years I started getting melanomas and scc’s.  I still need to stay out of the sun as my drug therapy now and being on prednisone my immune system is depleted.  My skin now is very sensitive- especially my legs.  It’s all about quality of life and doing your own research.  Good luck.

    leanne

  • Diana L Burgess

    Member
    September 25, 2022 at 1:21 pm

    In Apr 2021 my Dr put me on imuran after I got out of hospital when he told me I had myasthenia gravis. I took it for about a month and had to stop it .it made me very sick.

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