Poll: dexamethasone

[Inara]

Hi everybody,

I found that dexamethasone helped a lot with my symptoms, including PEM/PENE. I didn't take it on a constant basis, but in a "pulsed" fashion: 3 days every 2-3 weeks. The dosage seems to be low with 1mg. I do have severe side effects starting with 2mg (much louder tinnitus - which remained - insomnia, tremor-like feeling, very wired). The improvement was on-going, i.e. after stopping the dex, I still felt better over weeks.

I took prednisolone in the past, too (also "pulsed"), which helped, but not like dex did. Hydrocortisone did nothing to change symptoms, but I never took it long-term (just as a "one-time" thing).

Do you have experiences with dexamethasone? Did it help, or did it just cause side effects or even a worsening? Did you take it on a daily basis, as a one-time thing or in a pulsed fashion? I would be happy about any more details about your experiences.

Experiences re. other cortisones are welcome, too, although this thread lays a focus on dexamethasone (also because I didn't find much about it on the forum).

I am also interested in this because of the rituximab trial where both the treatment and the placebo arm received 8mg dexamethasone. Of course, this poll won't be representative, but still interesting to me...

I never did a poll before, so I expect problems and errors.

Thanks for participating!

 

[ljimbo423]

I am also interested in this because of the rituximab trial where both the treatment and the placebo arm received 8mg dexamethasone.

I don't have any experience with dexamethasone but I found this steroid conversion chart that might help put into perspective the dose of dexamethasone that was given in the rituximab trial.

8 mg dexamethasone is equal to 200 mg hydrocortisone.

 

[Wishful]

I tried prednisone. After five days of no effect, I wrote it off as another "doesn't work" treatment. The next morning I awoke to full remission. The remission ended a couple of days after tapering off the prednisone. I managed to get a second trial, and that had the same effect after only two days. I tried it a couple more times over the next few years, even at a double dosage, and it had no effect. Other people reported the same 'works once or twice, but never again' effect on ME.

There's no way to know whether smaller doses taken continually might have kept me in a remission state. Of course, taking cortisol long term has its own problems.