When does the Dr use Immunosuppressant?

    • Anonymous
      March 8, 2011 at 6:02 pm

      During the course of my travels seeking diagnosis, including after I started IVIG, a standard question I always asked the physician was, “Is there any other medication I can try?” Without exception the reply was “No, there is not.” As for, “what is the best treatment?” The answer was, “in your case we prefer IVIG.” Turns out, up at Mayo, at least for the folks I’m seeing, they prefer IVIG anyway.

      Don’t go there, I’m talking about Immunosuppressant only.

      When I went to Mayo Clinic Rochester, Mn in the Fall of 2009, had the muscle biopsy and got my first ‘real’ diagnosis, I was told the same thing by all 3 doctors I saw.

      Drum roll, please-

      In the Spring of 2010, lo and behold, ‘they’ said- “We want to start you on a new medicine.” Turns out that was Imuran, generic is azathioprine, and they said “It could take up to one year to realize any effect.”

      To exosurf- How do they know when to start it? I couldn’t say for sure. My guess is that in this case ‘they’ wanted to see my reaction to IVIG by itself first.

    • Anonymous
      March 8, 2011 at 6:49 pm

      I was on Methotraxate for 18 months. The neuro and I was trying to see if this addition could help me and possibly stretch out my IVIG infusions. The Methotraxate didn’t help and it made me more tired with mouth sores.

      IVIG works for me with all its inconveniences and insurance woes but it works.

    • Anonymous
      March 8, 2011 at 9:45 pm

      Make sure you get a blood test called TPMT before starting Imuran. We don’t have the test in Canada and hubby got sepsis within 3 weeks of starting Imuran. (we said we would cross the border into the States to get the test, but neuro. said it was not necessary) Far safer to get the blood test and see if you will have problems metabolizing Imuran.. Hubby was critically ill and in hospital with his reaction to Imuran.

    • Anonymous
      March 8, 2011 at 10:30 pm

      In my case, it took several months for the diagnosis of CIDP. It was believed at first to be GBS. Only when it recurred, and further tests were done, was it diagnosed as CIDP.

      My neurologist started me on just Prednisone at first. That is, apparently, the simplest treatment, and works well for some folks. But, it didn’t do much for me, and my CIDP came back like gangbusters.

      Next, he started me on regular IVIG and Imuran (generic, actually). My problem was that I reacted badly to the Imuran, and my platelet count fell like a rock. He had to take me off the Imuran, and just use IVIG for several months.

      Finally, he restarted Imuran at a relatively low dose (50 mg per day), in conjunction with the IVIG. After several months at that level my platelet count was still pretty good, and he increased the Imuran to 100 mg per day. I have been going at that dosage for two months, platelets are still OK, and I have been doing fairly well. In fact, I have increased the interval between IVIG treatments from 3 weeks to 4 weeks, and I still feel fairly good. This month I am going to try to go to a 5 week interval.

      My point is that every patient is different, and all doctors may have a somewhat different approach. I appreciate the fact that my neurologist admits he does not have all the answers, and must adapt and adjust the treatment according to the results.

    • Anonymous
      March 9, 2011 at 12:17 pm

      I was on Methotrexate for eighteen months to see if it would help my CIDP and lengthen time between IVIG infusions. The Methotrexate ended up making me more tired with mouth sores.

      Even with the many inconveniences of IVIG it has helped me greatly. Hoping something new will be on the horizon.