Cyclophosphamide (Chemotherapy)…someone tried it ?

    • May 16, 2016 at 5:12 pm


      Initially I was hospitalized and diagnosed with GBS , I had series of 5 Plasmapheresis threatment.
      Since there was no improvement I was diagnosed then as CIDP
      IVIG for 6 month did not help a bit.
      Since no improvement the Prof’ decided to “jump” to 2nd line of threatment cyclophosphamide (Chemotherapy)

      I’m advised to start cyclophosphamide for 6 month.

      Anyone tried it ?

      I read a lot of side effects on that.


    • May 16, 2016 at 5:57 pm

      What was your dosage of IVIG, and how often? Also, what brand?

      • May 17, 2016 at 2:47 am


        I know this is not tipical CIDP , My symptoms are still severe weakness in gloves & socks.
        distinguishing GBS from CIDP in my case is the long term of non improvement (got worse in my case).
        I ment “plasma exchange.”.
        5 days of IVIG and 6 month IVIG (INTRATECT & Privigen) , 35 mg.

    • May 16, 2016 at 7:23 pm

      Plasmapheresis and Plasma Exchange (PE) are similar, but very different. PE is usually recommended for CIDP. If it wasn’t PE, that could be why you had no response. The main difference is the tissue depth/penetration and the thoroughness of the cleansing process of PE.

      I had about 80 PE’s in total to take out the antibodies that were attacking “self”. After that was taken care of, IVIg worked to keep my system from creating more bad antibodies. IVIg alone, won’t remove bad antibodies already in your system, that’s the job of PE.

      One form of chemotherapy I’m aware of that has been proven to help CIDP is Rituxan. There was a clinical trial using Cyclophosphamide but it was withdrawn:

      However, some evidence exists supporting its use to treat certain types of CIDP:

    • GH
      May 16, 2016 at 11:01 pm

      Jim, people often say “plasmapheresis” when the precise term for the particular treatment is “plasma exchange.” I expect that is what it was. What concerns me is that I have not heard that whether or not one responds to a particular number of PE treatments is a criterion for distinguishing GBS from CIDP. The OP seems to imply that CIDP patients do not rspond to PE. This is not necessarily true. There is variation in response to treament whichever the diagnosis.

      I was initially diagnosed GBS, then CIDP. Under the latter diagnosis I was given nine PE treatments, but it was only after about six or seven that I started recovery. Five may be typical, but I think it is too few. I feel my excellent recovery was due to having more than the usual number of PE treatments, although there is no way to prove this.