Corticosteroids, hydrocortisone, prednisone for ME/CFS

I am responding very very well to high dose steroids (60-100mg predi a day), my brain is maybe 80% of pre-covid on this stuff, and have now found someone to monitor me with a mammoth dose that is sometimes used in MS and SFN: 1000-1250mg a day for 3-5 days.

Will report back in a few weeks if this causes any sort of fundamental change, I cant imagine it will result in remission but its seemingly more low risk that the other options im looking at (cyclo, ritux etc). Fingers crossed, long term steroid use is something I want to avoid for obvious reasons.

I am 2 years long covid with classic ME symptoms as found in CCC.
 
The one time I took one dose of steroids one time for one day it was a miracle—the whole fatigue/brain fog thing melted away. But I had the feeling that if I kept on taking steroids that it would poop out after a while like every other drug, so I haven’t revisited.
 
Trish said:
We are not allowed to give medical advice on this forum, but I hope you are under the supervision of an expert for this treatment.

We have a thread that might interest you where members have discussed their experiences with low dose hydrocortisone.
https://www.s4me.info/threads/low-dose-hydrocortisone-as-a-treatment-for-me-cfs.6739/page-3
My impression from glancing back through it is that it seems generally to be a bad idea for ME/CFS.
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As iv only responded to high dose steroids, i cant imagine that low dose stuff would be in anyway useful at all. The fact that its takes around 100mg+ to bring me close to pre-covid levels shows how substantial the inflammation people are dealing with.
Yes, and GP monitoring bloods.
 
Our experience with 1000mg pulses of prednisolone in lupus was that there was no advantage over standard dosage.

As Trish says, I hope you are under close supervision. High dose prednisolone is quite high risk, the most common problem being major gastrointestinal haemorrhage.
 
I've always wondered if certain types of stress have the power to prevent PEM. There have been multiple occasions in my experience where I was in "push comes to shove" type stress and was sure that I'd keel over the next day, but didn't. Once I was running around to find help for my then-wife's psychiatric emergency. Another, we were forced to walk fast to catch a connecting flight from domestic to international terminal. PEM was a certainty with that kind of exertion back then. Whatever that forced me to stay alert seemed to prevent PEM. Steroids are capable of serious damage though. I might try just to test the theory, and then create a natural situation for positive stress. Living on the road did the trick for me.
 
siobhanfirestone said:
what is the standard doseage for lupus?
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Anything from 5mg to 60mg daily and in those days maybe up to 120mg prednisolone equivalent per day for acute life threatening situations.

Our trial compared 1000mg with 100mg given as three shots if I remember rightly.
My memory from then and understanding since is that the high dose 1000mg preparation was never proven to be of value in any particular situation. A company decided to produce a 1000mg vial of methylprednisolone and it became popular but if lupus was typical this was not originally on the basis of any good evidence. I suspect there was no need to apply for a license just for a bigger vial.
 
Jonathan Edwards said:
Anything from 5mg to 60mg daily and in those days maybe up to 120mg prednisolone equivalent per day for acute life threatening situations.

Our trial compared 1000mg with 100mg given as three shots if I remember rightly.
My memory from then and understanding since is that the high dose 1000mg preparation was never proven to be of value in any particular situation. A company decided to produce a 1000mg vial of methylprednisolone and it became popular but if lupus was typical this was not originally on the basis of any good evidence. I suspect there was no need to apply for a license just for a bigger vial.
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yes that makes sense, wow 120. So the current rationale is to limit long term use and there is some data in MS and SFN (which i have) of causing a sort of periodic remission, and being (as opposed to long term like 1 month +) safer somewhat that sustained use. I cant find much data on this but a few SFN doctors and patients have said this to me. I guess i will find out quite quickly if there is any efficacy at least.
Its frustrating, we wont know what is driving this inflammation even if this does help in some meaningful long term way. This is an option before cyclo, which I am considering also.
 
poetinsf said:
I've always wondered if certain types of stress have the power to prevent PEM. There have been multiple occasions in my experience where I was in "push comes to shove" type stress and was sure that I'd keel over the next day, but didn't. Once I was running around to find help for my then-wife's psychiatric emergency. Another, we were forced to walk fast to catch a connecting flight from domestic to international terminal. PEM was a certainty with that kind of exertion back then. Whatever that forced me to stay alert seemed to prevent PEM. Steroids are capable of serious damage though. I might try just to test the theory, and then create a natural situation for positive stress. Living on the road did the trick for me.
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the treatment is for inflammation, reducing cortisol to "stress" makes no sense within my own context
 
siobhanfirestone said:
Its frustrating, we wont know what is driving this inflammation
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I personally think we can be 98% sure there is no inflammation in ME or Long Covid.
Even with well documented B cell/antibody driven diseases the problem is not necessarily one of inflammation. The problem is aberrant signalling that may be mediated through immune pathways that normally would either silently clear things away or produce inflammation but in autoimmunity do something different.
 
Jonathan Edwards said:
I personally think we can be 98% sure there is no inflammation in ME or Long Covid.
Even with well documented B cell/antibody driven diseases the problem is not necessarily one of inflammation. The problem is aberrant signalling that may be mediated through immune pathways that normally would either silently clear things away or produce inflammation but in autoimmunity do something different.
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?
i. https://www.cell.com/cell-reports-medicine/pdf/S2666-3791(22)00195-1.pdf
ii. https://www.nature.com/articles/s41467-023-40012-7
iii. https://www.science.org/doi/full/10.1126/science.adg7942
iv. https://www.sciencedirect.com/science/article/pii/S088915912300363X
v. https://www.frontiersin.org/articles/10.3389/fmed.2023.1011936/full

counter study:
i. https://journals.sagepub.com/doi/full/10.1177/17562864241229567
here they find 0 difference, and say its likely psychological.
 
siobhanfirestone said:
I am responding very very well to high dose steroids (60-100mg predi a day), my brain is maybe 80% of pre-covid on this stuff, and have now found someone to monitor me with a mammoth dose that is sometimes used in MS and SFN: 1000-1250mg a day for 3-5 days.

Will report back in a few weeks if this causes any sort of fundamental change, I cant imagine it will result in remission but its seemingly more low risk that the other options im looking at (cyclo, ritux etc). Fingers crossed, long term steroid use is something I want to avoid for obvious reasons.

I am 2 years long covid with classic ME symptoms as found in CCC.
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Bone thinning?
 
siobhanfirestone said:
the treatment is for inflammation, reducing cortisol to "stress" makes no sense within my own context
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Can't comment on PASC since it is a different animal, but there is no evidence of inflammation in MECFS. Association with inflammatory cytokine doesn't necessarily mean inflammation or higher level of cytokine. No cytokine panel trial ever consistently turned up higher level as far as I know. If it works, that's great for you. But you don't know if it works by tempering down inflammation or by something else. I mentioned stress because steroids, besides being anti-inflammatory, are known to enhance, not decrease, stress.
 
siobhanfirestone said:
i. https://www.cell.com/cell-reports-medicine/pdf/S2666-3791(22)00195-1.pdf
ii. https://www.nature.com/articles/s41467-023-40012-7
iii. https://www.science.org/doi/full/10.1126/science.adg7942
iv. https://www.sciencedirect.com/science/article/pii/S088915912300363X
v. https://www.frontiersin.org/articles/10.3389/fmed.2023.1011936/full

counter study:
i. https://journals.sagepub.com/doi/full/10.1177/17562864241229567
here they find 0 difference, and say its likely psychological.
Click to expand...

Just a neat example of how much meaningless dross is out there in the literature. We have discussed all of those studies on the forum I think. None of them show anything very convincing. The complement abnormalities may pan out as something real but note that complement activation in the circulation is an anti-inflammatory clearance mechanism. Complement is only inflammatory if activated outside circulation. Immunology is complicated and increasingly stuff is being published by people who don't seem to understand the basics.

The whole point about the idea of Long Covid is that tests of inflammation are negative - CRP, etc. And there are no physical signs of inflammation or on brain scans etc. A subgroup have evidence of damage but not inflammation.
 
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