I relapsed 3 times during my rehab(s). My medical plan was to switch over to Azathioprine/Immuran at 200 mg/day from predisone (60 mg/day). I did have to gently ramp up (increase daily dose by 50mg/day every 3 weeks) to the 200mg/day on Immuran. I was only up to 100 mg/day on the Immuran when I had my last relapse in the first week of May this year. What the Docs noticed on the last relapse was that my recovery time rehabb’ing was real quick because of a dosage of IVIg. Then I went back & constructed a “Calendar” of my treatments starting in Jan. What I found was my relapse cycle was 30 days. Discussed that with my neuro’s who may or may not found that interesting. However, my medical plan was changed to add 2 day infusions of IVIg every 30 days. Two weeks ago Friday I was totally off of predisone & had my monthly infusion of IVIg. I have NOT used a wheel chair since mid May, and sine yesterday have NOT used my wheeled walker, plus using a small footed quad cane around the house. I also have been going what I term as “Freestyle”, i.e., no cane, just walking.

So knock on wood, I have escaped the June/July/August/September relapse cycles. The “Plan” for me is to continue on this course until Jan, & then to switch to a one day IVIg Infusion Cycle.

My current “Medical Plan” seems to be working, i.e., skipped 3 relapse cycles so far (knock on wood). It is 200 mg/day on Imuran with 2 days of IVIg every 30 days. I am also weaning off of Predisone, currently at 50 mg/day backing off 10 mg/day per week. Backing off on the Predisone maybe the crap shoot.

See my posting in the general forum re: Inmran (Azathriprine), a combo of Inmuran/IVIg (2 day IVIg every 30 days – my crash cycles).

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.

Recently diagnosed with CIDP and was admitted to Swedish Cherry Hill in Seattle, first a medical floor and treated with IV Steroids for 5 days which seemed to shock the immune system.  I was lucky enough to be admitted to their Intensive Rehab Unit 2/6/13 where I was switched to oral predisone (60mg) for a period of 3 weeks then 40 mg for 3 weeks, then was dropped to 20 mg.  All the while my improvements were exceptional from barely able to even sit up to totally mobile and independent in a walker and wheelchair.  I was even scheduled to go home and I crashed/relapsed not be able to stand to a walker.  They hooked me up to IVIG for 5 days of tranfusions which seemed to have limited positive effect.  At that point they followed up with the IV steroids for 3 days which almost immediately seemed to help, then back on oral at 60 mg predisone for 4 weeks and just last week down to 50mg.  The rehab almost had to start all over again but the progress back to independently mobile again was pleasently surprising, I’m home as of yesterday.

The point of my posting in this thread is that in a conversation with a new Neuro Doc I mentioned that I was a 15 colon cancer survivor, Lower 6 inches of my small and the first 8 inches of my large intestines were removed.  That is where most B complex vitamins are absorbed, especially B-12, a nerved nuritrement.  She quickly put me on what she termed “Loading Doses” of B-12.  And told me that I will get B-12 shots once a month for life.

My present CIDP treatment/maintenance plan now is maintaining the 50mg Predisone, and starting a ramping up doseage of Immuran until I am at a 200 mg level (month & a half).  Then start ramping the Predisone down slowly in increments of 10 possibly 5mg’s over a longer period of time.  Wish me luck.