Poll: Has an immunosuppressive dose of Prednisone helped you in the short term?

[Jesse2233]

Prednisone is a steroid with powerful immunosuppressant properties. It is sometimes used by rheumatologists to assess whether a patient has an autoimmune condition that may respond to other treatments (when laboratory testing and one's clinical picture are inconclusive). Note that the euphoric feelings it can sometimes produce may cloud the picture.

There are scattered reports of Prednisone putting some ME/CFS patients into temporary remission or making them feel worse. Of course one can not stay on it long term as its side effects are horrible especially when taken long term.

I'm curious as to who has taken it and benefited as a rough analogue of who may have an autoimmune etiology. I'm including POTS as a sub option because I have a hunch that POTS is an indicator of autoimmunity (although I could be wrong about that).

Feel free to reply with your subjective experiences and thoughts. Thanks!

 

[Woolie]

Yes, I had a really bad relapse a few years ago where I couldn't lift my head off the bed, I was like that for several months and eventually I tried prednisone 40mg. It worked like a miracle. I was back at work within a week.

I was on it for maybe six months - including a long tapering down period at the end where I dropped 1 milligram a week.

I credit the drug with saving my job for me.

Its a double edged sword though, because I had to taper off so slowly. I put on a lot of weight, and developed cataracts. That's unusual I think, and it wasn't the worst thing for me, because I just got them removed. The worst was probably the weight and the way my face swelled up.

I've tried the same approach since, but now I don't have anywhere near the same response. Its like you develop a tolerance or something.

I have to say my illness is very relapsing-remitting with lots of inflammation. I don't have POTS and I don't get really bad cognitive symptoms. Its more of the flu-like symptoms. It might not work so well if you had the more POTS-cognitive impairment pattern.

 

[Alvin2]

What an interesting idea, though i know from family members being on it the side effects and withdrawal symptoms
If it works how long would it take to have effect?
How risky is it for worsening symptoms?

 

[Hanna]

I was in hospital for an allergic reaction to bee sting for 4 days and was given prednisone. I didn't expect to notice my POTS symptoms greatly diminished and I had a lot more energy. I don't remember exactly the dose but it was clearly 40 mg or more aday, as I was told to tapper down slowly to 40, then 20 etc at home.

 

[ukxmrv]

It has to be a large dose though. It's been a very long time since I tried this but somewhere between 25-40mg

The good effects gradually wear off even on a high dose and then I crash badly

 

[Chris7172]

Look at the evidence on PubMed that points to immunosuppressant drugs definitively causing monophasic CMV infections. The primary one documented is Ciclosporine. One healthy guy even got CMV in his eyes after taking Ciclosporine eyedrops. Prednisone is not dissimilar in its action. Another took oral Ciclosporine and developed a brain infection of CMV.

Obviously it has been known for a long time that systemic immunosuppressant drugs can lead to systemic CMV infections, but what hasn't been considered adequately is that healthy people can take 'lighter' versions of these drugs and get localized infections that don't go away after stopping treatment.

It's this scenario: Immunocompetent people take immunosuppressant drug (often for minor issues). Completely latent CMV reactivates/spreads. The person then stops taking the meds and the immune system suppresses the CMV--almost completely. Instead, it lingers in localized location such as the GI tract or eyes, and remains even when the person is immunocompetent.

I call it the "Foothold Theory". The virus takes a foothold in hard to reach places after immunosuppressant drugs. Most people who take the strong drugs (like transplant patients) gets an antiviral. The entire infection is taken care of.

Prednisone: It feels good because it suppresses the immune response to the CFS cause. Of course, if you're suppressing your body's defense mechanisms, you're asking for the thing it's fighting to proliferate.

Just a thought.

 

[justy]

It made me worse and I suspect POTS, but have no diagnosis.
This is my experience, but you don't have an option for those who feel they may have POTS, but are undiagnosed.

 

[Hip]

I suspect POTS, but have no diagnosis.

It's easy to accurately diagnose POTS at home within 10 minutes: the method for doing so is given in the POTS section of this roadmap of chronic fatigue syndrome / myalgic encephalomyelitis testing and treatment (just search for the word POTS in the document).

 

[Wonko]

It's easy to accurately diagnose POTS at home within 10 minutes: the method for doing so is given in the POTS section of this roadmap document (just search for the word POTS in the document).

erm......not so much, sometimes I have it, sometimes I don't. Seems to be affected by both environmental temperature and to a lesser degree, by my state of health at the time I do it. Of course this may be biased by the fact it's not something I would/could do when crashed.

 

[Hip]

sometimes I have it, sometimes I don't.

Hmm, that's interesting. When I measure my own increase in heart rate on standing, there is a day to day variation, and it can be as low as a 25 bpm increase, or as high as a 40 bpm increase. But the POTS is always present.

 

[lansbergen]

Prednisone: It feels good because it suppresses the immune response to the CFS cause. Of course, if you're suppressing your body's defense mechanisms, you're asking for the thing it's fighting to proliferate.

Yep

 

[Wonko]

Hmm, that's interesting. When I measure my own increase in heart rate on standing, there is a day to day variation, and it can be as low as a 25 bpm increase, or as high as a 40 bpm increase. But the POTS is always present.

Surely those diagnostic criteria can't be correct? I understood it was normal for HR to go up up on standing, and then drop within a few minutes, those criteria seem to suggest that any reading more than 27 bpm higher than when supine means I would have POTS, even the one taken immediately upon standing, after the exertion of standing.

If that is the case then I have POTS, I have seen rises for low 80s to mid 130s immediately after standing when it's hot here, I've also seen it drop down to a mid 20 rise within a few minutes and then climb again as the exertion of standing still takes hold.

I had assumed that meant I might have "reactive POTS" if such a thing existed, and as it doesn't seem to that I don't.

Doesn't really matter either way, I have what I have, unless there is a fix

edit - and sorry to the OP for being OT.

 

[Chocolove]

I put on a lot of weight, and developed cataracts. That's unusual I think,

Actually those are common well-known effects of corticosteroids like prednisone.
http://www.mayoclinic.org/steroids/art-20045692?pg=2

Things get much worse the longer you use corticosteroids in any amount.

 

[justy]

It's easy to accurately diagnose POTS at home within 10 minutes: the method for doing so is given in the POTS section of this roadmap document (just search for the word POTS in the document).

I tried a PMTT at home and don't have a big pulse rise (no BP monitor at home), however I have all the symptoms of POTS and also have co morbid MCAS and EDS III.

I also would want an official dx, rather than just doing it at home and diagnosing myself, but im too sick now to travel to London for a specialist who understands POTS, MCAS and EDS.

 

[erin]

Is 1ml diprospan injection immunosuppressive dose?

 

[Woolie]

Prednisone: It feels good because it suppresses the immune response to the CFS cause. Of course, if you're suppressing your body's defense mechanisms, you're asking for the thing it's fighting to proliferate.

So you're adopting a chronic infection model of CFS? The opposing view which seems to be gaining more traction recently is that CFS is an immune dysfunction.

I can't say which view is right, but its important to point out that your account of the possible dangers of prednisone rests on the assumption that there is an underlying chronic infection.

Remember that even things like high antibody titres to CMV might not mean we have a lot of active CMV infection. It might be a consequences of the way our immune systems are overworking (creating too many antibodies).

 

[Woolie]

I put on a lot of weight, and developed cataracts. That's unusual I think,

Actually those are common well-known effects of corticosteroids like prednisone.
http://www.mayoclinic.org/steroids/art-20045692?pg=2

Cataracts are unusual at the dose and duration I was taking. (I wasn't referring to the weight gain, that's very common).

 

[Learner1]

So you're adopting a chronic infection model of CFS? The opposing view which seems to be gaining more traction recently is that CFS is an immune dysfunction.

I can't say which view is right, but its important to point out that your account of the possible dangers of prednisone rests on the assumption that there is an underlying chronic infection.

Jarred Younger identified 2 subsets: autoimmune and infectious. I spoke with him at the Symposium as I have both, and he said there's definitely that case too in the patient population.

Remember that even things like high antibody titres to CMV might not mean we have a lot of active CMV infection. It might be a consequences of the way our immune systems are overworking (creating too many antibodies).

Er, high titers may mean we don't have an acute infection. But they may very well mean we have a chronic recurrent infection simmering along destroying our health and creating antibodies. Or so says my expert CFS doc and other experts.

 

[Learner1]

@Jesse2233

I wasn't sure how to answer your survey. I've been on hydrocortisone and dexamethasone, but they sure haven't helped my POTS, though they've helped other symptoms...

From what I gather, dex is 20x stronger than HC, while prednisone is 4x stronger. My doctor has me on HC to help my immune system, not to suppress it.

 

[anne_likes_red]

I was actually on 20 mg per day when I developed ME. I took it for around 3 months in total.
I didn't have obvious POTS when I first became ill, but it has developed since.