Corticosteroids, hydrocortisone, prednisone for ME/CFS

By the way, rtx doesn't do anything for ME/CFS. There was a Phase 3 trial that showed no effect and huge placebo response.

 

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.

 

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

 

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

 

ive read the paper, cyloc makes more sense tbh but im scared

 

Wow, that's really interesting & would explain why they have been liberally dosed out by the irresponsible!

 

i bailed on this to do cylco due to my concerns with the limited data, sorry gang

 

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

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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.

 

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!

 

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.

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.

 

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.

 

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.

 

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.

 

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.

 

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