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Prednisone got me out of bed, should I continue?

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Wow, for some people - mainly low doses - it seems to have been a turning point!

@justy, I was expecting more people to report your type of experience. That is, worse off after than before steroids. That's what I really fear. What's Cpn?
Chlamydia pneumonia -

My main problems were immune suppression and worsening of all M.E symptoms. This has happened twice. But my experience is different to your as I felt dreadful on them - which surprised the doctor and the pharmacist!
 

anciendaze

Senior Member
Messages
1,841
I want to remind people of some ancient medical history of what happened when corticosteroids were first used to treat TB patients. They felt better even while infection ran wild. Misdiagnosis of miliary TB, and treatment with corticosteroids, has even led to patient deaths. (Most modern doctors in regions with good healthcare have little understanding of the range of manifestations of TB, which can affect every organ system. Suppressing immune response may be useful, as in endobronchial TB, where it can close airways, but must always be coupled with concern for control of infectious disease. If doctors are unaware infectious disease is present, there are real risks, as case reports show.)

There is evidence patients with a range of problems which have turned up on this forum have abnormalities in regulation of these hormones. Wide variations in sensitivity to these, and problems with regulation, make this an area where expert attention to individual characteristics is important. The literature is anything but simple.

In my case, a shot of prednisone intended merely to open Eustachian tubes and sinuses so I could take an airplane trip made me feel so good I went two days without sleeping. You can guess what happened next. I was lucky not to end up in a psychiatric ward in a country where I did not speak the language.
 

SDSue

Southeast
Messages
1,066
I also stayed on very low dose estrogen and also some T3 in my thyroid meds plus I have taken good supplements for the past 10 years so my conclusion is that if one needs a normal amount of cortisol and one's body isn't able to produce it then it certainly hasn't harmed me taking on average 6 mg Prednisolone for nearly 12 years.
May I ask how you've tested your cortisol over these 12 years, and how often you test? Also, what doctor is managing all your endocrine stuff for you? (I've had horrible luck with endocrinologists so I see a GP who specializes in hormones for my T3, hormones, etc. Not sure he'd want to venture into prednisolone with me!)

Thanks!
 

Sidereal

Senior Member
Messages
4,856
There's a big difference between taking replacement doses of steroids for adrenal insufficiency vs. big doses needed for immunosuppression. When it comes to immunosuppressive doses, my big fear is if ME and even diseases considered autoimmune turn out to be due to an occult infectious process. There are important lessons to be learned from the history of Lyme disease in America with regard to rheumatologists. They diagnosed juvenile rheumatoid arthritis and treated people with steroids (even though Lyme disease was known to be infectious in Europe) and then reluctantly switched to puny short courses of doxycycline once denial of infectious aetiology because impossible while spending the next 30 years denying the existence of chronic Lyme disease. I'm sure some of their patients felt better/elated on steroids for a while too.
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
@SDSue I haven't had my cortisol tested much at all during the past 12 years apart from a few saiiva tests which seemed to show I was still producing a very small amount of cortisol but it was flat-lining at a low level. So basically I haven't tested for many years now. I know that Prednisolone doesn't show up on a saliva test.

My body soon lets me know when I am running low I start to feel not right at all and dizzy. It wakes me up at night if I am too low in cortisol and I have to take a tiny bit of h/c for it to settle which it will within 15 minutes. Also my body wakes me for my steroid and thyroid meds every morning any time from 4.30 am - 6 am. After taking them I go back to sleep but I only take 2.5 mg Pred at that time of the morning and before I have to get out of bed I take another 1 mg of Pred (plus a low dose betablaocker).

Really nobody is monitoring the endocrine stuff. My GP will test my thyroid function and that's about it but I have from time to time done tests through Genova to monitor my oestrogen/progesterone levels which have always looked good on the very low dose of Estrogel. For some reason, probably connected to my low cortisol I produce above average levels of progesterone so don't take any extra despite still having a womb. I feel very bad if I take extra progesterone, could end up murdering my partner and have non stop horrendous migraines.

I think its part of the disordered pathway that I have from which these essential steroids are produced. If it wasn't for pure luck I would never have got treated then by the NHS and don't know what would have happened to me. The private Endo thought I had a mild Sheehan's Syndrome because of my history and my GP goes along with this. From what I have seen of the Endos in the NHS I am not impressed.

Pam
 

SDSue

Southeast
Messages
1,066
Thanks, @bertiedog for your detailed answer! It's been over 3 years since I got mine tested, and that was right about the time I was going from bad to bed, so I need to get an idea again. At that time I was not quite flatlined, but close.
 
Messages
3,263
I'm sure some of their patients felt better/elated on steroids for a while too

@Sidereal and @anciendaze, I'm not sure yet where to place my bets yet on this illness. Is it an occult, ongoing infection or raging, ineffective cytokine storm? With the recent research on autoimmunity and rituximab, there seems to be increasing support for the second view. What we have was probably initiated by some pathogen or series of pathogens in the past, but now is the primary problem the pathogen itself, or our reaction to it? That's the million dollar question!

Its horrible having to make this call ourselves, isn't it? No real guidance from anyone. I feel like I'm playing with my life and health.

For what its worth, I've decided to stick with the 20mg pred for another few days then start the slow taper down. I don't feel elated and I don't feel "well", but the flu-type malaise has lifted and I can do some stuff like write and even light relaxation like go to movies. But @A.B., your advice was good, I do still seem able to get PEM, and have to be extra careful to read the signs.

Best case scenario: this will buy my immune system some down time after two months of being on constant high alert.
 

Sidereal

Senior Member
Messages
4,856
For what its worth, I've decided to stick with the 20mg pred for another few days then start the slow taper down. I don't feel elated and I don't feel "well", but the flu-type malaise has lifted and I can do some stuff like write and even light relaxation like go to movies. But @A.B., your advice was good, I do still seem able to get PEM, and have to be extra careful to read the signs.

Just to clarify, I wasn't implying you were elated from the prednisone, I was just making a general point that some people get a hypomanic or manic episode on steroids and mistake that feeling of "fake great" for a true improvement in the underlying condition. Should have phrased that more carefully.
 

awkwardlymodern

Forcing the past to blend with the future
Messages
52
To anyone else considering prednisone, I second everyone here who has suggested that it could be dangerous since it may allow causative pathogens to proliferate, weakening an already impaired immune response. You might feel better but it's worsening the underlying cause.

I don't know if this is helpful to anyone, but I took telmisartan for about a year to suppress my extremely elevated TGF-beta. (TGF-beta is elevated in many ME patients, it is an anti-inflammatory cytokine which generally suppresses and regulates the immune system, but it is hypothesized to have less effect on Th2 cells than Th1 or Th17).

Interestingly, the telmisartan-induced TGF-beta blockade both worsened my ME and shifted my generally Th1/Th17 dominant cytokine profile to a Th2 profile.

During this time, I felt MUCH better on prednisone, but tapering off (as others have mentioned) caused a major relapse.

After stopping the telmisartan, my symptoms improved. With my TGF-beta high again, and my Th1/Th17 cells reactivated, I had another exacerbation of my ME after a strep infection. This time, I tried a very short trial of a small amount of prednisone, just out of curiosity.

This time, taking prednisone made me feel a lot worse.

So our immune and cytokine profile at the time probably determines whether or not prednisone will make us feel better or worse, but it does not change the underlying disease or make it a "different disease."

Another issue to consider with prednisone is that it generally causes tissues to weaken and thin over time. Thin and fragile (excessively permeable) intestinal walls and blood-brain barriers, depending on who you talk to, are either causative factors, contributing factors, or symptoms of ME/CFS pathology.

But any way you look at it, you don't want a thin, leaky gut, BBB, or any other membrane when you have ME.
 
Messages
3,263
Thanks for responding, @zebraturnedtiger. Its interesting that the pred helped at one stage, but not at another. You're probably right about the different stages of the illness responding differently.

I understand your caution. I don't expect this to be curative, but I do want to keep my job! And if the alternative is being bedbound, it doesn't feel like there's much to lose. Admittedly, I am 50 now, so maybe willing to take more of a risk that if I were younger with a chance of spontaneous improvement.

Plus, there's growing support now for the view that much of our illness might be due not to the underlying pathogen itself, but to the abnormal way we react to it. Or the two feed off each other in some complicated and self-sustaining way. So maybe not so daft to try turning down off the mad immune reaction for a short while and just see what happens. Whatever my immune system is doing, it doesn't seem to be very effective, cos I continue to be really, really sick!

Pred is used for a lot of autoimmune conditions, including MS, lupus, rheumatoid arthritiis, etc., and there do seem to be important similarities between ME and these conditions.

Update: the prednisone is still working, but its effects do seem to be wearing off over time. Doctor has upped my dose to 40ms for 7 days (3 more to go), then I have to try and taper off. I don't expect that's going to be easy, but will keep you all posted.
 

awkwardlymodern

Forcing the past to blend with the future
Messages
52
Thanks for responding, @zebraturnedtiger. Its interesting that the pred helped at one stage, but not at another. You're probably right about the different stages of the illness responding differently.

I understand your caution. I don't expect this to be curative, but I do want to keep my job! And if the alternative is being bedbound, it doesn't feel like there's much to lose. Admittedly, I am 50 now, so maybe willing to take more of a risk that if I were younger with a chance of spontaneous improvement.

Plus, there's growing support now for the view that much of our illness might be due not to the underlying pathogen itself, but to the abnormal way we react to it. Or the two feed off each other in some complicated and self-sustaining way. So maybe not so daft to try turning down off the mad immune reaction for a short while and just see what happens. Whatever my immune system is doing, it doesn't seem to be very effective, cos I continue to be really, really sick!

Pred is used for a lot of autoimmune conditions, including MS, lupus, rheumatoid arthritiis, etc., and there do seem to be important similarities between ME and these conditions.

Update: the prednisone is still working, but its effects do seem to be wearing off over time. Doctor has upped my dose to 40ms for 7 days (3 more to go), then I have to try and taper off. I don't expect that's going to be easy, but will keep you all posted.

Good luck on your taper! Don't go too fast...it can be dangerous, as you said there is a "mad" immune reaction going on. Just go very slowly, and you should be OK. I'll be waiting to hear how it goes :)
 
Messages
3,263
Update on my progress:

I'm now on day 7 of 40mg prednisone, and since the evening of day 1 (which started bedbound), I've seen a gradual improvement, and am now back to fully functioning in my (sedentary) job. Side effects: insomnia on days 1-2, treated successfully with ambien. No other noticeable side effects. It seems that the initial 20mg was just not enough to damp down the immune activity, but 40mg does the trick. Of course, there's still the possibility that I would be improving by now anyway, without the pred. I can only speculate.

A reminder to anyone reading that my ME is very relapsing-remitting, and I took the pred as a last resort to treat a severe "flare" that had left me bedbound for 10 weeks and was threatening my job. Might not be the right approach for those whose condition is more steady.

The real test now is what will happen when I start the taper tomorrow. No question I have to, 40mg is only suitable for temporary use. But the taper will be low and slow. Will all the benefit disappear, putting me back in bed, or will I get some carryover benefits?

Will keep you posted.
 

OverTheHills

Senior Member
Messages
465
Location
New Zealand
I have had an interesting experience with florinef. I started on a quarter of a tablet, and experienced immediate remission type improvement from day 1, marred only by worsened insomnia and a tendency towards being hyper. Surely this is too quick for blood volume effects and must be steroid type remission? what do you sciency people think?
OTH
 
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Kati

Patient in training
Messages
5,497
Steroids have for effect to perk you up. As a RN i remember patients geing up all night, having friends over, eating a dozen donuts while on steroids. The opposite would happen when they were off the steroids.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Steroids have for effect to perk you up. As a RN i remember patients geing up all night, having friends over, eating a dozen donuts while on steroids. The opposite would happen when they were off the steroids.
This is true for pharmacological doses of steroids but not so much for physiological doses which are much, much lower.

For example, I get terrible insomnia when my cortisol is too low but sleep like a baby with the right amount. Sometimes an extra 5 mg of HC will put me right to sleep in the middle of the night if I've gotten low which seems counterintuitive to those who are only accustomed to seeing the effects of high dose steroids.

It's very much a Goldilocks situation but one should not be getting mania type symptoms on a physiological replacement dose. It's a sign that it is too high and should be lowered.
 

OverTheHills

Senior Member
Messages
465
Location
New Zealand
A quarter of a tablet (a quarter of 0.1mg) of Florinef (sorry wrote cortef earlier - corrected post now) seems like a low dose to get 'steroid mania' type symptoms - and I didn't think florinef was as bad for that as prednisone. That is why I posted. I'm confused.
OTH
Thanks to anyone who can help explain.
 
Messages
3,263
A quarter of a tablet (a quarter of 0.1mg) of Florinef (sorry wrote cortef earlier - corrected post now) seems like a low dose to get 'steroid mania' type symptoms - and I didn't think florinef was as bad for that as prednisone. That is why I posted. I'm confused.
OTH
Thanks to anyone who can help explain.
Hi @OverTheHills, I don't know a whole lot about Florinef, but I know its hard to compare it directly with other corticosteroids because they have a different mechanism of action. From what I just saw looking it up, 0.1mg is a pretty standard dose of Florinef for lots of indications (usual range 0.05 to 0.2mg). And nervousness and insomnia seem to be common side effects at this dose.

Since you only took a quarter of 0.1mg, its kind of on the low side. But being your first dose, I guess it wouldn't be all that surprising to experience some of those side effects, at least initially. You might find these effects go away quickly - maybe even by tomorrow. About the good, remission type effect, that might go too, unfortunately. It does seem this happened too quickly for comfort.

But hey, I feel a bit in the dark. Would be good if there's someone around here who has more of a handle on this.