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    • #19788
      Charlie
      Participant

      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.

    • #19791
      Gregory E Lucier
      Participant

      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.

      • #20054
        Geoff Verschoor
        Participant

        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.

    • #19792
      Andy
      Participant

      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.

    • #19793
      Robert Perrou
      Participant

      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.

    • #19795
      David S
      Participant

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

      Scott

    • #19796
      Marguerite Thibeau
      Participant

      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

    • #19797
      Robin J Hughes
      Participant

      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.

    • #19798
      Jennie Morris
      Participant

      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.

      • #19807
        Alan Bridle
        Participant

        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,

      • #19808
        Alan Bridle
        Participant

        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.

        • #19954
          Jennie Morris
          Participant

          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.

        • #19958
          Alan Bridle
          Participant

          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!

    • #19799
      Dan R
      Participant

      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.

      • #19959
        Alan Bridle
        Participant

        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!

    • #19800
      Celeste M Matthews
      Participant

      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.

       

       

    • #19802
      Debbie Butler
      Participant

      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.

    • #19803
      Monica
      Participant

      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.

       

    • #19804
      David Holten
      Participant

      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.

    • #19810
      FrancisW
      Participant

      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.

    • #19811
      Amirbz
      Participant

      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.

    • #19812
      Ari Maayan
      Participant

      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.

    • #19813
      Sue
      Participant

      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.

    • #19814
      Douglas F Young
      Participant

      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.

    • #19817
      John G Fay
      Participant

      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)

      • #19818
        Ari Maayan
        Participant

        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!!!

    • #19826
      Lester Shaw
      Participant

      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.

    • #19835
      Lovina Wolgamott
      Participant

      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

    • #19974
      Louis Sokol
      Participant

      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.

      • #19975
        Ari Maayan
        Participant

        Thanks for the warning Louis!!!

    • #20000
      Audrey
      Member

      My 88-year-old mother has been taking Azathioprine 150 mg for the last two years and her neurologist is increasing her dose to 200 mg to see if it will help her weakness caused by covid (she is fully vaccinated and boosted too). It has been tolerated well by her without any side effects. Initially, she was prescribed Mestinon, but couldn’t tolerate it.
      She has tolerated Azathioprine well, and only once did we have to reduce her dosage due to a blood test showing she was anemic.

    • #20002
      Ari Maayan
      Participant

      <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>

    • #20009
      Leanne
      Participant

      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

    • #20029
      Diana L Burgess
      Participant

      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.

    • #20016
      John Palatucci
      Participant

      H all, i was diagnosed in 2015 with gMG and was put on high doses of imuran50 40 daily, mestinon60 4 daily and prednisone 40mg daily for 4 weeks then tapered down.at present i am taking 3 imuran daily, 3 mestinon daily and 10mg Prednisone twice a week. Tho i do now have mild anemia i do have basil cell carcinoma on different areas of my body, am due for dermatology checkup..my current numerologist suggest i start Ultomiris but am concerned about the threat of severe meningitis so i am holding off on that because it is so new.my wife just started imuran for pericarditis but it to soon to tell how it will affect her. But as for me imuran has been helpful

    • #20035
      Derek
      Participant

      Hi John

      I was diagnosed with gMG in February 2020, and placed on initial high dose Prednisolone, 50mg every 2 days, tapered down quickly to 10mg per day, together with Mestinon. In mid April 2020 I was placed on Azathioprine; I was due to have blood tests every 2 weeks, but after only 10 days things went wrong. With a temperature of 41oC, I was admitted to hospital. One test they did was for CRP (Creatinine Reductive Protein). It registered at 241mg/kg, when the norm is 0-6mg/kg! I was initially diagnosed with Covid-19, and placed on a secure Covid-only ward, fortunately in a room to myself. After two negative tests (they took 24 hours each at the start of Covid), I was downgraded to  non-Covid ward, but when Covid hit the non-Covid ward I was hurriedly discharged ‘With Sepsis’, on the discharge letter. The hospital stopped the Azathioprine due to suspected Covid, so upon discharge I restarted Azathioprine, only to repeat what had happened previously. So I stopped taking it! I have been on Mycophenolate Mofetil for over 2 years now without any issues. Hope this helps…….

      Derek

      Cambridge, UK

    • #20036
      Ari Maayan
      Participant

      Wow, John,

      That’s really scary. Thanks for sharing. Glad you survived it!!!!!

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