Corticosteroids, hydrocortisone, prednisone for ME/CFS

Another point maybe worth making is that prednisolone doses above 25mg daily produce a very significant high and sense of well being even if you weren't feeling unwell in the first place (as is the case for things like transplant conditioning). When the dose comes down there is a corresponding low.
 
Jonathan Edwards said:
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.
Click to expand...
luckily my actual doctors disagree, and thats why ive been able to find things that help.
I am uncertain about this long term, its likely I will end up doing chemo either at home or in India anyway, at this point its damage limitation
 
Jonathan Edwards said:
Another point maybe worth making is that prednisolone doses above 25mg daily produce a very significant high and sense of well being even if you weren't feeling unwell in the first place (as is the case for things like transplant conditioning). When the dose comes down there is a corresponding low.
Click to expand...
yes ive been made aware of this, its again a reasoning for the short/intense approach
if this doesnt work i have a choice of medium level steroids for a long time Vs something else, i will have a long think because whilst steroids are amazing, i dont want to mess with it long term
 
Jonathan Edwards said:
Another point maybe worth making is that prednisolone doses above 25mg daily produce a very significant high and sense of well being even if you weren't feeling unwell in the first place (as is the case for things like transplant conditioning). When the dose comes down there is a corresponding low.
Click to expand...
Wow, that's really interesting & would explain why they have been liberally dosed out by the irresponsible!
 
Last edited:
I found that the high wore off after about 3-4 weeks of Pred at 25 mg per day. I returned to my 'normal' level of ME functioning. It was very nice while it lasted.

One side effect I enjoyed was that I lost a lot of water or swelling ? in my body. Rather than the moon face reported in the side effects list I could see the bones again in my face and body. The loss was evident within the first week. That nevers happens with dieting or during the good times when I could exercise a little more.
 
Discussion moved from Patient and Public Involvement opportunities in ME/CFS and other research
So pleased to hear you're doing this research, Julia.

Common steroid meds cause severe ME in me, and I've often wondered about other people—especially if the link is less obvious because they take them more frequently than I did. Although the case you published is very specific, it's good to have people working on it in case there's something hiding here that might affect others.

I'd be useless at PPI, unfortunately, but I hope you find a couple of people with working brains!
Click to expand...

****



Julia O said:
Might you be willing (and able) to tell me more?
Click to expand...

Yes, that's fine. I've described it here before, it's nothing especially sensitive.

It was caused by common-or-garden steroids used for asthma and ear problems. Although they're topical steroids you do ingest some of the drug, especially with the liquid type that's squirted up the nose.

I only need occasional asthma treatment and the same went for recurrent labyrinthitis, so it took ages to realise that all the severe crashes I'd had coincided with taking these meds. If I needed to take the nasal spray long term because I couldn't clear the labyrinthitis, I'd end up confined to bed (normally I was only mildly or moderately affected), sleeping for 16 – 20 hours a day. This would go on for months, and even after I'd stopped the meds it would take ages to recover.

At the time I described it as severe ME, but I now know that although I was very unwell, it wasn't really the same thing. I have noise and light sensitivity, sure, but it didn't escalate the way it does in severe ME to the point where people have to lie in darkened rooms wearing ear defenders. I didn't avoid sitting up in bed because it made me feel extremely ill, I was horizontal because I couldn't stay awake.

I once asked a GP if it was possible the medications were causing this, but they said it wasn't. I finally fathomed it out when I started going suddenly dizzy with the onset of labyrinthitis, unearthed an old nasal spray that was still just about in date, and started using it. I'd been in good shape for some time, but within a day and a half of starting the spray I couldn't stay awake. I binned it for good at that point.

It doesn't sound at all like the case you studied, Julia, but it is ... weird. It's definitely repeatable, as I find out a couple of years ago when I had the worst dose of asthma for ages. I only took a fraction of the steroid doses I was prescribed and I did manage to stay out of bed, but I was still flatlining.

There could be any number of reasons it happens, of course, and I've no way of knowing one way or the other. My ME started at age 17 and I think I only took asthma steroids once before that, but they didn't cause this response. It seems either to be a post-ME thing, or a post-menarche thing (mine was unusually late, and the two things coincided).

If you need to ask anything else, by all means DM me your email address.
 
Last edited by a moderator:
Kitty said:
It doesn't sound at all like the case you studied, Julia, but it is ... weird.
Click to expand...

Definitely weird! I see what you mean that it's different, but actually there are some striking parallels. The patient's "unusual reaction" was that oral hydrocortisone (the same class of steroid (glucocorticoid) as used for asthma) left her unable to stay awake. As if she had taken a sedative. It started on the second day of treatment and continued until she stopped taking it. It sounds like a different pattern, and of course the different steroids all have slightly different effects and different durations of action, but it does seem like it could have a similar underlying cause. Plus the patient's steroids were oral, and it is known that nasal administration of various medications can have a particularly pronounced effect on the brain. It could all be linked to menarche too, due to the way reproductive hormones are metabolised and the effect they have on expression of the relevant enzymes. You're the first person I've heard of apart from the patient for whom glucocorticoids were sedating!
 
Last edited:
Julia O said:
I see what you mean that it's different
Click to expand...

Yes, definitely. I don't have any endocrine issues, and I do seem to have underlying ME that's not related to the steroid meds. I'm as sure as I can be that it wasn't triggered by taking them.

Julia O said:
You're the first person I've heard of apart from the patient for whom glucocorticoids were sedating!
Click to expand...

Nice to know I'm not uniquely odd!

I wonder if the fact that I had ME to start with, and was only just coping energy-wise, was partly what made it show up so starkly. With the asthma meds at least, I think I'd have been able to carry on if I'd been healthy; I might have put feeling very tired and sluggish down to the fact the asthma was keeping me awake at night. It wouldn't surprise me if there were other affected asthma patients who haven't joined the dots.

The nasal spray is different, it seems to have a much stronger effect. As a young healthy person I'd have been better equipped to cope with it, but I couldn't have missed the effect. That medication might be taken by far fewer people (especially for several months at a time) than asthma preventers, though, so perhaps it's less likely to be reported.

Anyway, I hope the research goes well, it's an intriguing finding. By all means DM me if you can't find both PPI participants; I could potentially do it, I just know there are people who'd do a much better job because they're less cognitively impaired than I am. I struggle with verbal articulacy in particular, but writing's not much better! It's taken me 50 minutes to draft this. :rolleyes:
 
Julia O said:
Plus the patient's steroids were oral, and it is known that nasal administration of various medications can have a particularly pronounced effect on the brain. It could all be linked to menarche too, due to the way reproductive hormones are metabolised and the effect they have on expression of the relevant enzymes. You're the first person I've heard of apart from the patient for whom glucocorticoids were sedating!
Click to expand...

Hello Julie O, I wonder what your sources are for your statement that nasal medications (I'm assuming you include nasal steroids) can have a "particularly pronounced effect on the brain."

I have moderate to severe fibromyalgia and some symptom overlap with ME/CFS
x28 yr duration.

My use of continuous nasal steroids for non-allergic rhinitis (x 30 years now) preceded the onset at age 46 of fibromyalgia symptoms by about two years. Onset of fibromyalgia symptoms began at age 46, which is common.

Your statement, of course, piques my interest.
Thanks.
 
Kitty said:
Anyway, I hope the research goes well, it's an intriguing finding. By all means DM me if you can't find both PPI participants; I could potentially do it, I just know there are people who'd do a much better job because they're less cognitively impaired than I am. I struggle with verbal articulacy in particular, but writing's not much better! It's taken me 50 minutes to draft this. :rolleyes:
Click to expand...

Thanks Kitty, I will keep you in mind. It really is fascinating and I bet you're right about other people having the same thing but not joining the dots because it's not usually so obviously linked to the medication. And thank you for putting so much effort into writing the reply - I really do appreciate how much of a struggle it can be.
 
shak8 said:
Hello Julie O, I wonder what your sources are for your statement that nasal medications (I'm assuming you include nasal steroids) can have a "particularly pronounced effect on the brain."
Click to expand...

Hi Shak8, This review article gives a pretty good overview:
Huang Q. et al. Research progress in brain-targeted nasal drug delivery. Front Aging Neurosci. 2024 Jan 17;15:1341295. doi: 10.3389/fnagi.2023.1341295. I don't know if/how it might relate to fibro - this whole field has barely been considered and I think it warrants more investigation.
 
Hi Julia. I'm really interested in your conversation with Kitty. I realise that you have probably found your participants but I thought I would let you know of my potentially related issue.
I have a reaction to any form of anti-inflammatory. Initially, I started the ME symptoms every time I tried a new NSAID and eventually gave them up as a very bad idea after the symptoms became permanent. In more recent years I had a bad dose of sinusitis and was given Fluticasone Nasal spray. It took a couple of weeks of gradual decline before I realised I was reacting to the spray. Generally I have good control of my symptoms and can manage a virtually normal life, if somewhat limited on the amount I can do, but this floored me.
I don't know if I can be of help. I am a pharmacist and have obtained a private diagnosis of Lyme-like disease, from which I have done much reading around the subject. In my case, I believe that the suppression of prostaglandins by anti-inflammatories is what enables the proliferation of the borrelia bacteria and causes the flare-up of symptoms.
Thanks for your time reading this.
 
CarolH said:
In my case, I believe that the suppression of prostaglandins by anti-inflammatories is what enables the proliferation of the borrelia bacteria and causes the flare-up of symptoms.
Click to expand...
Hi Carol, interesting! That does sound like a different process from what I'm looking at with this study, but I bet there are others who have experienced something similar. Maybe we should start a separate thread about steroids and anti-inflammatories triggering ME symptoms.
 
Julia O said:
Hi Carol, interesting! That does sound like a different process from what I'm looking at with this study, but I bet there are others who have experienced something similar. Maybe we should start a separate thread about steroids and anti-inflammatories triggering ME symptoms.
Click to expand...
It's not so much that the NSAIDs are the cause of the ME, just that in my case they allowed the borellia to proliferate. (I had a nasty bite when on holiday in the Canaries which I think was the origin of the infection) This is a spirochete bacterium which is pleomorphic so can survive within an individual undetected by the immune system (hence most tests for Lyme antibodies are negative) due to its ability to survive without a cell wall (as part of another cell I believe). With prostaglandin activity, they are kept to minimal levels, but if you suppress the prostaglandins, they can emerge with cell walls and multiply. I am no cell biologist or microbiologist but this is the gist of what I have read and understand with my pharmaceutical knowledge.

I am a firm believer that ME/CFS is a symptom for an otherwise undiscovered cause. No-one can feel that ill and have nothing wrong. All the tests are negative, so they are doing the wrong tests! I was lucky to find a clinic that believed the same. I also referred patients as part of my own practice, some came back with the same diagnosis as me and one patient came back with a diagnosis of organophosphate poisoning...this was a child living in an urban environment! Unfortunately the clinic closed down due to some allegedly dodgy practices but more likely due to some short-sighted bods who couldn't see the bigger picture. This GP was certainly a godsend to many people and if you or anyone would like further details of the process I undertook, I would be happy to help but I'm not sure if specifics are permitted on this forum.

Thanks for your interest
 
Anti-inflammatory drugs taken by millions of pregnant women around the world may raise the risk of autism in their babies.

A study looked at the impact on children who are exposed to glucocorticoids - a class of steroids - in the womb.

Those prenatally exposed to the drugs were between 30 and 50 percent more likely to be diagnosed with autism compared to children whose mothers did not take them.

The study also linked glucocorticoids - which include prednisone and cortisone - to a higher risk of intellectual disabilities, Attention-deficit/hyperactivity disorder (ADHD) and anxiety.

Glucocorticoids mimic the hormone cortisol, which is produced by the adrenal gland and known for its anti-inflammatory effect.

They are prescribed to pregnant women at risk of preterm births because they also help with the fetus's organ development and maturation.

The drugs are also given to pregnant women suffering from autoimmune or inflammatory disorders such as rheumatoid arthritis, lupus, and asthma because they dampen down the immune response.

However, the new study suggests if babies are exposed to excess amounts of glucocorticoids it can alter their brain development in a negative way.........

Some side effects of prolonged glucocorticoid use have been known for decades, the most common being weight gain and the joint disease osteoporosis.

But the latest body of research out of Denmark suggests the drugs could also harm the developing brains of babies.
Click to expand...
full article
Anti-inflammatory drugs taken by pregnant women linked to autism
 
They are prescribed to pregnant women at risk of preterm births because they also help with the fetus's organ development and maturation.
Click to expand...

If the causality goes they way they suggest it might, you’re essentially weighing the risk of one disability against another. Being born preterm is no joke, even just a few weeks.

Someone with more knowledge of stats might be able to say something about their analysis.

They also explained why they were looking at this:

Furthermore, our findings support those of previous animal and human studies. Mechanistically, the theory of fetal programming may be important.2,8,9,12

First, exposure may alter CNS structure and function.13-15,35-37 For example, animal studies have shown that prenatal administration delays both astrocyte and capillary tight junction maturation, and myelination of the corpus callosum in fetal sheep.35,36

Furthermore, administration has been reported to affect the neuronal cytoskeleton and presynaptic terminals in baboons.37Human studies have reported larger amygdala volume, altered neuronal connectivity, and altered CNS receptor density after prenatal exposure.13-15

Second, prenatal exposure may modify the regulation of the hypothalamic-pituitary-adrenal axis (stress axis) toward greater bursts of cortisol.8,9,12

Finally, administered glucocorticoids can suppress maternal production of cortisol.2 Cortisol and synthetic glucocorticoids display different receptor affinities and may disrupt natural development.
 
You must log in or register to reply here.
Back
Top Bottom