• Anonymous
      July 12, 2013 at 8:38 pm

      Hi everyone. Today my neurologist suggested starting Inmuran (Azathioprine) which seems to have scary side effects. Wondering what has been the experience of others who have used this med?

    • July 21, 2013 at 9:12 pm

      I was started on Inmuran/Azathioprine after my discharge from Seattle Swedish Cherry Hill in mid April (CIDP). The daily dosages started at 50mg’s, ramped up to 100mg’s after 2 1/2 weeks, with dosage planning on ramping up 50mg’s every 2 1/2 weeks. That’s when I had my replapse and was admitted to OMC Hospital in Port Angeles. Immediately my daily steriods on admittance went sky high plus the Inmuran went to 150 mg’s. Also I was administered 5 days of IVIg. I was stablized and transferred to a local Nursing & Rehab center when I eventualy and on schedule ramped up to the daily dosage of 200 mg’s of Inmuran. What my GP Doc & my Swedish Cherry Hill doc made note of was I rehab twice as fast as thye time before. They believe (and well as I do in this crap shoot of medical planning for CIDP’ers) that my “Crash/Relapse Cycles” were very consistent 30 day cycle, coupled with coming up on max daily dosages of Inmuran contributed to the rapid rehabb’ing. I Think that InMuran which suppresses the bad Immune responses is good but not good enough at the end of my crash cycles, so a “Prophalatic (sp.) Treatment” at the end of my crash cycle floods my immune system (with other folks’ Good Immune IVIg) helps me over the hump. I am almost afraid to talk about it and superstisusly (sp.) jink it. The bottom line is that “The InMuran/IVIg (Inmuran every 30 days for 2 days) has gotten me past two crash cycles (knock on wood and pray a lot). Also my step son who had/has a very serious case of Crohn’s has been managing it via Inmuran for 16 plus years with no adverse side effects. He also told me that the max therapudic effect/value does not really occur until you have been at 200mg’s/day for at least 3 months. I just passed month 2 at 200mg’s/day last week. I now seem to have HOPE again and that is wonderful after a long road out of the rehab hole (since 2/1/13 when I was diagnoised).

      I am in outpatient rehab now locally and have NOT touched my wheelchair or push walker in 3 1/2 weeks, primarily get around my house with a wheeled walker (balance mostly) supporting my weight with my legs, and the best part, started using a quad cane very well. As I said — HOPE.

    • July 21, 2013 at 9:19 pm

      Also I should mention that I am still on Predisone @ 80mg’s/day. If I get through and past this 3rd crash cycle, the medical plan is to lower the predisone to either 70mg or 60mg/day. Then after each crash cycle sucess of IVIg treatment gradually ween me off of those ROIDS. The Swedish Doc even mentioned long term medical planning that the IVIg treatments may lengthen out to see what happens (and to me that is SCAREY!!!!).

    • August 4, 2013 at 4:47 pm

      My experience with Inmuran was BAD, BAD. I had been in partial remmission with monthly IVig when my neurologist tried Inmuran. After a couple of months I developed a bad case of shingles and a week later I was in the emergency room completely paralysed. Six weeks later and several rounds of IVig I went home and started learning how to walk again, first with a walker and later with a cane.

    • August 4, 2013 at 5:39 pm

      Well, so far so good & knock on wood, I have ramped down to 60 mg/day on the predisone without any adverse effects or reactions. The plan is to ramp down 10 mg/day each week until no more predisone. I should mention that my youngest stepson who has been living with Crohn’s (and 3 major bowel resections) for over 20 years. He has successfully managed his Crohn’s with Imuran/Azothriaprine at 250mg/day for over 16 years.