anything worth a shot??

August 27, 2008 at 4:27 pm

Hi ya Norb,
just a real quickee post as am gettting kids off to school etc, yeah there are a few here and there have been a couple of threads fairly recently re peoples current experiences. Some of us are actually having the pulse mthylpred IV and some oral. In my case am having it IV weekly 500mg,(next week decreasing to 250mg) have been on this 500mg dose for 10 mths. The tricky thing is am on other therapy (twice weekly ivig, and immunosuppressants) so i am not completely sure what is giving me the greatest benefit. All in all have improved 95% (from paraplegic to being fully dependent and running duathlons etc). I definately get results from the ivig as have tried several times to reduce to just weekly doses but begin getting weaker – falls etc. It will be interesting to see what happens now we are reucing the methyl pred – and yes it is a big reduction! Have to try these things though!!
I read the article also and had just finished reading Dr Parry and (i think it was J Steinberg) latest reaserch findings solely on a methylpred programme. Results definately were positive and i too am hoping I will be one of these fortunate CIDP’ers to discover remission. Can get back to you later re title etc so you can try and source the data, it was very interesting.
gotta fly
catch ya later