Solumedrol (iv steriods) instead of ivig

    • Anonymous
      May 24, 2007 at 8:34 am

      I put an update on our 3 year old on this site but some might not see it. I wanted to tell the CIDP patients, the ones that ivig is not helping, to try heavy doses of steriods. I know all about the drawbacks but when you can’t get off the couch because your ivig has stopped working, I think most ppl. would try anything.

      Dell had 5 days of solumedrol and the following week (presently) we are in the hospital for 4 doses (every 6 hours). I will consult with the dr. this morning regarding the future treatment schedule.

      If you are interested in this, look for the forum posted by Pam about Dr. Parry coming to the MN meeting and pushing steriods instead of ivig. I’m not sure what doses would be correct for an adult.

      Dell is doing things he could not do for a couple of months, we are keeping our fingers crossed this will continue.

      I urge you to at least try it, maybe it will be your ticket to feeling better too.


    • Anonymous
      May 24, 2007 at 10:08 pm

      I was talking with another mom who has a daughter with something called JDM. She gets IV solumedrol infusions once a month and IVIG infusions once a month but 2 weeks apart. The girl’s tests show no active disease, which is REALLY good.

      I say if it works for Dell then it’s the greatest thing on earth!

      I hope he continues to do well.


    • Anonymous
      May 24, 2007 at 11:36 pm

      I am so glad to hear that Dell is doing so well. I was suprised to learn that this is now the first line of treatment used at the University of Minnesota, but they qualified two misconceptions about solumedrol: first off, they are not talking about oral prednisone (which has more side effects & is harder on the stomach), secondly, if the correct dosage is found, which is about half of what they used to give adults, then the side effects usually associated with steroids are greatly reduced. I am sure that it took a lot of experimenting to come to this conclusion. Also, these are CIDP patients that do not get IVIG as a treatment, only the solumedrol. Maria (Aphrodite from this forum) lives in Cyprus & has been getting solumedrol for years as her only treatment & doesn’t seem to have any permanent adverse side effects.