Corticosteroids, hydrocortisone, prednisone for ME/CFS

To me it is totally unsurprising that corticosteroids given to pregnant mothers might impair detail brain growth. But then we only give them to mothers who would otherwise be dead or too disabled to contemplate pregnancy otherwise (mostly lupus) and tend to have illnesses with major risks for the foetus anyway.

This may be additional useful data but, as has been said, this is a question of balancing risks.
I think it is irresponsible to title it 'anti-inflammatory drugs' since that term is largely used to mean drugs like ibuprofen or naproxen. Why not be precise and say steroids.
 
LisaG said:
Early in the summer I had a synthetic corticosteroid injection (Kenalog: Triamcinolone acetonide) for joint pain. To my surprise, I no longer experience the same lymph node pain and flu-like feeling on exertion. As a result I have an increased capacity for activity. It's been several months now and I am still experiencing this partial remission.

Has anyone experienced something similar, or know any more that might help me understand?

My ME also improved after I stopped my HRT medication.
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Feeling good! Not so great I can read through this whole thread, alas, but good enough to check in here and say that methylprednisolone (generic for Medrol) has me feeling vast improvements in pain levels, energy, and mental clarity. That last bit has me especially curious: is it about reduced inflammation in my brain? Trippy thought.

I was prescribed a short course of oral methylprednisolone in lieu of the cortisone shots I received in past for trochanteric bursitis and plantar fasciitis. The idea is that reduced inflammation and improved blood flow will reduce the pain in those specific areas, hips and soles. But the overall increased feeling of wellness, and of being myself again, has me wishing I could stay on a steroid indefinitely.

The sharp increase in pain occurred after I went off HRT for menopausal symptoms. What if I went for low-dose testosterone, I have to wonder.

My experience has me wondering about steroids, hormones, and what research may have been done on their treatment potential in ME.
 
Hi everyone,

Due to other health conditions I repeatedly have had some mostly very good experiences over the last 30 years or so with diverse types of cortisone and dosage schemes.

The other health conditions are allergic illnesses (moderate to severe), an once suspected MS and a newly suspected autoimmune disease.

Given my latest experiment which I started around middle of March with 8 mg Dexamethasone/ day, I want to leave an urgent warning here: Cortisone can give you potentially life-threatening side effects. It can also change your personality in a very unpleasant way -- unpleasant both for yourself and for your environment.

Hope I will be able to write more at some other time and place on the form. But my recent days were no fun -- despite some amazing improvements in the first two weeks of my experiment.

I had luck and in addition to my partner and friends some other nice and alert people always made me aware, at least when some of my incautious behavior in the last couple of days took place in the public. E.g. I thankfully agreed it's not a good idea to continue sitting in the waiting room's open window on the 2nd floor. If I need both fresh air and to sit down, better place myself before the closed window between the two opened windows. And many more such situations. Add a high blood pressure and pulse that isn't healthy at all and the increasing confusion from accumulated severe insomnia -- not nice.

I'm happy that since I managed to reduce the dosage to 6,5 mg/ day (starting this time form 8 mg) the extremely unpleasant side effects begin to get better, I'm calmer again, can sleep a bit, realize myself when I start to do not only silly but potentially harmful things and stop doing them. Reducing further to 0 mg will still take some weeks however, as my doctor said I need to reduce extremely slowly to not provoke some [insert what happens if you reduce too quick].

Also, despite my previous good experiences, I should add that these too were accompanied by challenging side-effects, including sometimes being impatient and even rude to others and repeatedly needing to apologize for misunderstandings due too confusion and also too often a lack of impulse control

Just in case it's of interest, among the other Cortisone treatment schemes were these:

a) very long term betametasone at a low dosage (2mg/ day over 3 years)

b) repeated dexamethasone pulse treatment at a high dosage (56mg/day) but only for 3-5 days, repeated 4 times a year. With these I had only very minor unpleasant side effects.

(c) same pulse treatment idea as (b) but with Methylprednisolone 1000 mg/ day,

(d) long term prednisolone at a moderate dosage (20mg) starting from a high dosage (100 mg), over 6 months

Please everybody be careful when experimenting with Cortisone, even if you have as responsible and wonderful doctors as I have -- they can't predict how you will react. Even if didn't experience severe side effects in the past, this can always change.
 
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Creek said:
My experience has me wondering about steroids, hormones, and what research may have been done on their treatment potential in ME.
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There is a long history of people trying steroids. Probably not much in the way of decent trials but I think some formal trials showed only marginal and temporary benefit from smaller doses. larger doses have lifted threatening side effect in almost everyone. The experience with nearly all other diseases is that steroids can be life saving in very special situations but otherwise produce more trouble than benefit over long periods. The history of steroid use in rheumatoid arthritis is one of the great disaster stories of medicine.

The problem with assessing benefit from steroids short term is that even healthy people feel better on steroids for a bit - and often seriously bad on trying to cut them down. Feeling better is not necessarily a sign that there is any inflammation to treat.
 
MSEsperanza said:
Given my latest experiment which I started around middle of March with 8 mg Dexamethasone/ day, I want to leave an urgent warning here: Cortisone can give you potentially life-threatening side effects. It can also change your personality in a very unpleasant way -- unpleasant both for yourself and for your environment.
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Is that the dreaded "'roid rage"?
 
MSEsperanza said:
can give you potentially life-threatening side effects. It can also change your personality in a very unpleasant way
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10 years ago, I was prescribed prednisolone for allergic contact dermatitis on my hands. 2 courses sent me doolally, unable to sleep, hallucinating (visual and audio), and also triggered Red skin syndrome (AKA topical steroid withdrawal). It took nearly two years to recover.
I can never use any steroids again, (as I am now allergic to them) and I am much more susceptible to allergens than I ever was before.
 
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Jonathan Edwards said:
if there was the sort of response we see in conditions like RA or polymylagia
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Could you elaborate more on what those responses look like? Does it totally resolve the disease while they are on it?

Last time I looked into this, my sense was some pwME report they feel much better on steroids (and others that they feel worse). I did see some pwME say it's the best they've felt since falling ill, but it doesn't sound like it made them 100% better or anything.

I tried to find studies but could only find research using low/physiological doses (presumably for the obvious safety reasons). As you'd expect, low doses didn't do anything much. I didn't think the doses used in RA have ever been formally trialed in ME/CFS?

Edit: Actually there might be one: the old McKenzie 1998 study of hydrocortisone bills itself as "Low-Dose Hydrocortisone" but gave patients 25-35 mg (equivalent to approximately 6 mg of prednisone) per day -- which from googling seems to be around the RA dose?
 
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Jaybee00 said:
Most people I know who took a dose of strong steroids had a nice vacation from ME/CFS.
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That lines up with what I’ve heard as well. I have an unusual reaction to steroids, so I’ve spent time seeking out patient accounts of taking them. Some people do very well on them and can even exercise without triggering PEM. I think these people probably take a higher dose and not the low-dose regimens that I seem to remember having been studied in the past.
 
Jaybee00 said:
No comprendo. Most people with ME/CFS have pretty strong (positive) responses to steroids.
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Jaybee00 said:
Most people I know who took a dose of strong steroids had a nice vacation from ME/CFS.
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No idea if it is a common response for ME/CFS patients, but I had something like that experience [with Prednisolone]. Not a full vacation, but a very distinct and substantial improvement, that went away after I stopped taking them.

However, that is also a common response to steroids in the general population. So we can't draw too many firm conclusions from it as a treatment for ME/CFS.

Besides, serious steroids are not viable long-term treatments, they have horrendous and very damaging side effects.
 
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I was given a small dose of Prednisone at very severe ME and it was absolutely awful. It gave me akathisia, this is what people who come off hard drugs can get in withdrawal. The symptoms of akathisia are enough to make you want to take your life. I felt that need to want take my life and stopped the tablet immediately.

Maybe a small dose wasn't the right dose for me but after that experience I don't want to try Prednisone again.

I should add that when I told my GP about it she said Prednisone will make you either mad, sad or glad.
So my experience was 'mad' but really it wasn't because I was mentally 'mad' it was the intolerable physical symptoms of the akathisia. Mentally I was ok and not wanting to run out on to the road but I wanted to end the intolerableness of the symptoms in my body. It wasn't a mental problem. More the body telling the mind that this is unbearable and please do something about it.
 
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EndME said:
I think the Charite study for Long-Covid will have included ME/CFS patients and possible stratified for that. Not sure if they published results though, which would probably anyways indicate they were negative.
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Do you mean the
PoCoVIT study involving prednisolone, or did I get that wrong?
There are already publications on that:
link.springer.com

Randomized controlled double-blind trial of methylprednisolone versus placebo in patients with post-COVID-19 syndrome and cognitive deficits: study protocol of the post-corona-virus immune treatment (PoCoVIT) trial - Neurological Research and Practic

Introduction Post-COVID-19 Syndrome (PCS) includes neurological manifestations, especially fatigue and cognitive deficits. Immune dysregulation, autoimmunity, endothelial dysfunction, viral persistence, and viral reactivation are discussed as potential pathophysiological mechanisms. The...
link.springer.com link.springer.com
A few others are listed here (in German):

NKSG Post Covid-Syndrom und ME/CFS: Charité – Universitätsmedizin Berlin

Website der Nationalen Klinischen Studiengruppe Post Covid-Syndrom und ME/CFS
cfc.charite.de cfc.charite.de
 
Jaybee00 said:
Most people I know who took a dose of strong steroids had a nice vacation from ME/CFS.
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I didn't.
40 mgs of prednisolone (reduced gradually to zero over 6 months) + strong steroid cream, made zero difference to ME. I wish it had!

The steroid did stop the symptoms of the extreme itching/blistering auto immune disease it was prescribed for. I did feel quite happy on the higher doses (that was nice, but nothing dramatic). But nothing for ME.

I am much more exhausted and restricted daily now than before I started the steroid, mostly in bed by necessity but whether or not that is related to the steroids I don't know.
Also I now have significant skin thinning from the steroids. Which is a bastard as my skin was in good condition before, and the thinning is unlikely to reverse much because of my age.
.
 
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Jaybee00 said:
Most people I know who took a dose of strong steroids had a nice vacation from ME/CFS.
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Yes, but only a brief vacation, after which it stopped having any effect. That doesn't imply a direct link between ME's mechanism and that of steroids. I think it's more likely a temporary downstream effect of steroids. The steroids do something that can affect the ME mechanism, but then the body blocks (adapts to) that pathway. I think Jonathan was talking about a lack of continued response to corticosteroids.
 
Sean said:
No idea if it is a common response for ME/CFS patients, but I had something like that experience. Not a full vacation, but a very distinct and substantial improvement, that went away after I stopped taking them.

However, that is also a common response to steroids in the general population. So we can't draw too many firm conclusions from it as a treatment for ME/CFS.

Besides, serious steroids are not viable long-term treatments, they have horrendous and very damaging side effects.
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Daughter had horrible reactions to steroids - seems to be a subgroup where this is an issue.
 
Amw66 said:
Daughter had horrible reactions to steroids - seems to be a subgroup where this is an issue.
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Anecdotally I react really well to prednisolone/prednisone at all doses I have tried. I feel good and in the past have gotten maybe 20 percent more energy and increased step count without PEM (not going above 20 percent more steps) - this is while I was still able to walk around outside which stopped after I got covid.

It's a bit draining, the steroids, but that's it. Mild insomnia which goes away. I don't want to take it long term for all normal reasons that people cite. I am actually on it right now for an unrelated issue. Just putting it out there. I have been more active in the home with daily tasks (and energy to browse the forum which I've been away from) and happy about it. The taper makes me sad it's going away... (Am currently severe, housebound).
 
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