Anybody have any experience with this? The Mycophenolate previously prescribed
hasn’t done much good for me (others might have different results), so my Neuro had some other ideas, especially since the relapses got longer and worse.
Read up on the stuff, seems to have less severe side effects than the Myco and
Pred, so we’re on a new road.
Once a week, 40 mg, easier than 2000 mg of Myco daily.
I’ll keep you updated of any progress.
Article about previous research is below. (so happens to be done by some fellow
Dutch folk)
Haven’t been here in a while.
Basically been trying to ‘power’ through this new treatment with Pulsed High Dose Dexa which initially did me a lot of good. Or so I thought.
After the initial ‘no-relapse’ period of 3 months I have now experienced a few with a vengeance,
which I feel to be stimulated by the Dexa.
The course consists of taking 40mg for 4 days every 4 weeks on a strict schedule.
Normal Dexa ‘load-up’ dose for a guy my size is 9 mg a day and with Dexa being what it is I expected a few side-effects.
After the 6th dose (past week) things are out of hand and the normal onset of CIDP was faster than ever before. It seemed my body was trying to react to the Dexa more than the Dexa was treating the body.
Most negative side effects are still present including rapid irregular heartbeat, some serious unintentional weight gain and serious balance problems.
I saw a question earlier asking if anybody with GBS/CIDP had ever gotten worse from using steroids…?
The answer is yes, I did, but I will recover.
Onward and upward with the next idea. We shall prevail.
Have a great day.