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.
 
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