Corticosteroids?

[Alesh]

I would like to know what is your experience with corticosteroids.

I think ME/CFS is a big beast so you need a big weapon against it and so I also tried prednisolone. I think my ME/CFS is pretty similar to an exacerbation of MS. Further, prednisolone has many substantial physiological effects and is effective against many diseases. See wiki or any standard textbook on molecular biology for more info.

I started with 1mg of prednisolone, during a week I climbed up to 100mg, was taking 100mg for two weeks and then I went slowly down to zero. There was no effect on my ME/CFS. Side effects: negligible. My (perhaps flawed) conclusion: corticosteroids are of no help for me.

What is your experience with corticosteroids?

 

[starcycle]

I would like to know about this, too. I may have to take steroids to tolerate thyroid meds, and I'm wondering what it might do in CFS. Seems like they might make it worse with their immune suppression effects.

 

[JanisB]

I really found that low doses of Corteff helped me immensely, especially when I relapsed and had terrible OI. It was the only thing that kept my heart from pounding when I stood or even sat up. But after a year on 5 mg, I put on weight that I haven't been able to lose, so now I'm cutting down.

It doesn't solve the ME/CFS problem, only supplies some extra hormones to those who need it, but if you need it, it helps.
Janis B

 

[alice1]

A friend also has CFS and went on Corteff for 2 years(low dose) and it helped her tremendously.She's been off now for 2 years and still feels the benefits.

 

[Dr. Yes]

I only took hydrocortisone once, in a relatively small dose (don't remember how much; it was '92) a few months after developing ME/CFS (undiagnosed as yet). I had lymphocytosis at this time, later diagnosed as viral-type, so likely still had a fairly active viral infection. But my doctor thought it might be something else so put me first on two weeks of tetracycline, after which I felt somewhat better for the first time, then (based on nothing scientific) gave me a two-week downward-tapering hydrocortisone "chaser". By about 10 days I relapsed, very hard at that. Yes, I know, very confusing; it was only a brief HC treatment, the tetracycline had seemed to help which might have suggested bacteria or related pathogens... But there is little doubt that the HC made things worse.

I later found out, as I said, that those were "virocytes" in my blood, and they persisted for years. A few years later I also found out via a blood culture that I had acute viremia with HHV-6. (Earlier in '92, before the ME/CFS started, I had positive antibodies for CMV as well). And, subsequent trials with tetracycline and other antibiotics (including IV ceftriaxone) had zero effect.

Both my father (a clinical pathologist) and a few other doctors thought my relapse was due to viral opportunism when the HC caused (brief) immunosuppression, so I've avoided corticosteroids since that time. But I've noticed that in the last several years some doctors have become less concerned about the risks of viral activation due to steroid therapy.

Well, that's my experience, anyway. Based on it, I would recommend caution to anyone taking or considering taking HC if you have reasonably high HHV-6 or CMV IgG titers (and of course if you have positive IgM to either). I also know another PWC who started Cortef for adrenal insufficiency but has since relapsed; she has relatively high HHV-6 and EBV IgG titers.

Reading through the threads I've noticed that a few of us have had relapses on corticosteroids but more people have not; I wonder what the respective viral profiles of these two groups look like (HHV-6, CMV, EBV, etc.)...

 

[Dreambirdie]

I had a horrible reaction to HC. I took it last spring for about 6 weeks, and ended up with cardiac arrhythmia and severe anxiety, which last for almost two months, followed by severe adrenal exhaustion, which I still have not recovered from. The entire experience was HELLISH! I've written about it on other threads as well, so sorry if I'm being repetitious.

 

[dsdmom]

I H-A-T-E steroids

I was put on a quick taper of prednisone 18 months ago - was supposed to be on it for 6 days I think. Well, something happened and my body can NOT get off the stuff. So I am at 15mg and still trying to taper. Steroids are NOT fun to be on and cause serious irreversible problems.

That said, low doses of hydrocortisone seem to be more 'ok' for the body to handle.

But as a treatment for CFS, I doubt high dose steroids has any merits. Except for the volume expansion, which can cause less tachy on standing.

 

[alice1]

Sorry you had bad reactions..She went on cordef for her adrenals so I assumed it could be something we all could use.Very wrong assumption.