I’ve seen folks on here say corticosteroids really helped with their PEM while others say they blame corticosteroids on the severity of their illness. Granted I’m new here and not very knowledgeable so I could just be confused... Are they helpful or harmful?
At the least they are very powerful medications with lots of effects on the body. Not sure what all they are prescribed for- once upon a time for MS, but not now that there are safer and more effective drugs. I was reading about Jacqueline du Pre. Not sure that they'd be effective for ME/CFS other than helping with the blood pressure a bit. But, there are safer ways to do that.
The remission from prednisone faded shortly after tapering off; I forget exactly how long it lasted. I do remember that it took 5 days before the remission kicked in the first time, and two days the second. At day 4, I was convinced that the prednisone was yet another drug that didn't do anything, but I awoke the next morning feeling completely healthy, convinced that I was fully cured! That lasted for days, at least, but then faded. I managed to get a second prescription soon after, with similar effects. My doctor wouldn't allow me any more, but I'd discovered that cumin (cuminum cyminum) was just as effective at triggering the remission as prednisone. However, after taking a teaspoon of cumin daily, I realized a couple of weeks later that I was back to feeling ME again; I hadn't noticed the gradual return of the symptoms. I tried cumin every few months after that, hoping for it to start working again. I also tried prednisone twice in the following years, once at double the regular dosage, with no effect. Eventually (5-10 year later) I noticed that cumin was an effective PEM blocker (hard to notice PEM-blocking if you're avoiding PEM triggers).
Yes, the remissions seemed to be 100%. No my doctor had no idea why it stopped working. Of course, he had no idea why it worked initially either, so that's no surprise.
Other people here have reported similar remission from prednisone, followed by it never working again. This paper ( https://www.frontiersin.org/articles/10.3389/fpsyt.2020.00704/full )on inflammatory priming, posted in another thread might explain why. Our microglial cells are quite adaptive, so while something such as prednisone can kick us out of the ME state, they could adapt to that factor and stop responding. Some other factor might be holding our cells in the ME state.