craig with cidp for 2 years

    • Anonymous
      November 8, 2007 at 11:50 am

      Three months ago I had four large doses of Cytoxan. I was in the hospital for 3 weeks because they had to monitor my white blood cells and when my white blood cells bottomed out I had to be put in isolation until my white blood cell came up to a safe level. The Cytoxan worked well but it was slow and after being at home for two weeks I relasped again. I am now on IVIG every 4 weeks for days 54 mgs a day and this seems to have worked for now. I have had relapes while taking IVIG and it not work but I think that the combination of the Cytoxan and IVIG I am for now doing very well. Is there anybody else out there that has taken Cytoxan and if so please share with me you experiance. I have had CIDP for 2 and a half years now and I am on disability.

    • Anonymous
      November 8, 2007 at 2:15 pm


      I have not yet had cytoxan but am being considered for the high-dose cytoxan with stem cell rescue. Is this what you had? Or did you get the doses spread out once a week over several weeks?

      I know Pam on this forum has had good results from cytoxan. Perhaps she will post a reply. You may also want to search the threads, as she and others have discussed their experiences with the treatment.


    • Anonymous
      November 8, 2007 at 6:48 pm

      I am currently getting cytoxan and adriamycin and avastin every 3 weeks. I have had CIDP since May 2006 with 5 relapses back to the wheelchair with the last being in Jan. 2007. I was diagnosed with breast cancer in Aug and this is the chemo that I was put on. It has worked small miracles for me. I went from a walker to a regular cane just last week. Now the goal is get rid of it if my balance and endurance can improve more. I continued to get my IVIG every 3 weeks after the week I get chemo. I get a shot of neulasta the day after my chemo that doesn’t let my wbc’s bottom out as much. My oncologist is thinking he might try this treatment on an MS patient too. He was aftraid to give me the chemo intially since I still was so weak. I have started back to therapy 2 times a week and am making progress. I will have to see about Monday as it will be the first time back after chemo. Usually I am still kind of tired on Mondays after chemo so this will be a trial for me. So I am not saying its the easiest route as I’m bald and fat from the steroids but am happy as a clam as I can’t say I have really felt better in a year and a half! My brain is clearer, my eyesight has improved so I don’t have double vision and my fine motor allows me to type, write and do other things I haven’t done in a long time. So this is my experience so far. I have at least 2 more and possibly 4 chemo’s more to go. The hope is that after my surgery and radiation that the IVIG will be tapered off as well as the steroids that I couldn’t get off.

      How large was the dose of cytoxan? I get 1 gm plus the others and my oncologist thinks there is something with the combo that is doing it so well. Also my IVIG is 60 gm in one day so its a little higher than yours unless you made a typo of “every 4 weeks for days 54 mgs a day” I’m glad to hear things are turning around even if it is slow. My mantra has been “slow but not backward!” 🙂 Its so discouraging to go forward and then to sink a little lower than before.
      Take Care,

    • Anonymous
      November 8, 2007 at 7:29 pm


      I tried to email you last night but must have done it improperly, it came back.

      Dell is doing fine. We are keeping our fingers crossed, hoping he stays strong.

      He’s still on ivig every 4 weeks and solumedrol each week.

      I don’t know much about cytoxan, hopefully, we will never have to resort to that.

      Good luck,

    • Anonymous
      November 10, 2007 at 11:59 pm

      I may be the only person on this forum who underwent was at the time a very experimental cytoxan protcol for CIDP. I had already tried biweekly IVIG, plasmaphersis treatments, solumedrol infusions for 8 months, & even all 3 treatments for 12 weeks (every Friday), before my neuro suggested the chemotherapy treatment. I was basically a quad, totally unable to walk, could not raise my legs up, nor my arms, & had no use of my hands. I had been in this conditon for 8 months (in spite of all the other treatments) when my neuro decided to try the cytoxan.

      I received 5 loading doses in 8 days of 1140 mg of cytoxan as an inpatient, then once a month infusions at our local hospital as an oupatient for another 8 months back in 2003. By the summer of 2004 I began walking again & now walk with AFOs & take a cane when I go outside the home. I got my driver’s license back in Feb of 2005 & lead a fairly normal life for my age, I guess. I do battle fatigue & pain, mostly in my feet. For that, I take 1800 mg of gabapentin daily. I have not had any treatments since September of 2003, when I had my last cytoxan infusion & I have remained stable. I did not have any IVIG during my cytoxan infusions, but did need to stay on solumedrol until Feb of 2004 for strength issues.

      Feel free to email me if you have any other questions…