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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Cortisol brought me back to life.

bensmith

bensmith

Senior Member
Messages
1,547
lenora said:
Hi Again....I didn't have a chance to proofread the above...apologies! Indeed my swollen glands which were also swollen under my arms and had been that way for 35 yrs., did disappear, until I had a carotid stent inserted just last Monday. Unfortunately, they back although not under my arms.

My sleep has been seriously impaired by either the Encephalitis or the steroids...I don't know which. I did fall 11 times and ended up seriously hurting myself on the last one. The extreme weakness from stopping the cortisone. I should also mention that I had hallucinations during the second round...and all in all, it was a terrible experience. Medicine changes didn't help, and I guess a lot of things didn't. Over and done.

Still I hope the sleep improves. I've been getting 2 hrs./night if I'm super lucky and this has been going on since April. A long time, but I'll tell you that my average is about 4 hrs./night. Also, just fyi you can't have the new vaccines if you've had Autoimmune Encephalitis. It will bring on another attack and a different part of the brain may be affected.

I'm glad that you're doing well, Wayne, and I think all of us can have different responses to the exact remedy. Oh, out of interest, I've gone from an x-small, small to a large in clothing. This is directly due to the steroids and I'm not happy about it. Any ideas? My rather small diet is the same as before. Stay well....Yours, Lenora
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you cant have covid vax if you have auto inmune encephalitis?
 
L

lenora

Senior Member
Messages
4,691
Hi Ben.....That's what came out with the second vaccine. One sees it once in awhile as a side-effect, but the fact of the matter is that a lot of people have auto-immune diseases and are getting the vaccine b/c the virus is so much worse (esp. with the new strains from Brazil and S. America).

I'll be going with whatever I can get, as soon as I can get it. The third vaccine was the most questionable, AstraZeneca, (although the FDA isn't about to approve the AZ vaccine at this time), but they all say about the same thing. Too much news isn't good for us, that's a fact. Besides, half of it seems to disappear and we're left standing nowhere. At this time, I'm inclined to go with the Pfizer vaccine. Ask your Dr. what he/she thinks, especially after you've given your drug list and the person has had time to go over it. Best. Yours, Lenora.
 
K

KarenS2

Messages
4
gm286 said:
I take issue with this because hormone deficiencies are not necessarily "treatable." Cortisol replacement works for a while. The doctors will not have you stay on cortisol, at least not my own. Cortisol at low physiologic dose did nothing for me (4-5 mg). At 40-60mg, it brought me back to life as if I were entirely healthy again. It came with major side effects.

Hormone deficiency (if it is really my problem, and not ME/CFS), is not treatable. If the one or two rounds of cortisol were supposed to be a cure, then I suppose I did not have a hormone deficiency and did have ME/CFS.

Instead, I went right back to crash mode and the usual PEM/fatigue when I weaned off cortisol (even when I weaned off as correctly and carefully as possible).

If low cortisol is a recurrent and chronic problem in my case, then it is not treatable with low, physiologic and ongoing doses of cortisol replacement. Cortisol replacement comes with major long term side effects.
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This has been very interesting discussion that I enjoyed, thank you!

I wanted to add two points: First, cortisol has a clear 24 hour daily trend (as the graph in the link shows) with very high values in morning and almost zero in the night. Second, even small stressful events like sudden feeling of fear, or public speaking, or being judged by people can raise cortisol levels abruptly (the fear and flight mode of our body).

Both of these make me believe supplementation will be really tricky. Can you raise it with such regular events instead? And levels are never steady, so how much dose will one need to really compare to the daily levels? Isn't the pituitary gland supposed to compensate already?
 
L

lenora

Senior Member
Messages
4,691
Hi @KarenS2.....I was diagnosed with a pituitary tumor at the same time two other neurological illnesses were discovered.

I had a lot going on, and bromocriptine took care of the pituitary issue. I no longer take it and haven't for probably 20 yrs. or so. As a result, I've never really checked into the problem, thus can't offer much in the way of information. A medical cure was certainly better than accessing the tumor via the nasal connection to the brain. How it affected cortisol, I don't know. I wish I could help you more. Yours, Lenora.
 
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gm286

gm286

Senior Member
Messages
144
Location
Atlanta, GA
I stated I would update this thread when the time came. I guess I would just like to quickly mention that I have been back on a low dose of prednisone (5mg) indefinitely. I could not handle weaning off, all of my symptoms had returned. Just to be clear: I did not end up struggling with after effects or withdrawal, but with decade-old, familiar symptoms of inflammation, stiffness, low energy and weak muscles.

I had had about enough and asked a willing generalist to listen to me (once more) and not flinch at the simple fact of the matter that I required low dose prednisone to be well.

This, in addition to nightly use of Lexapro, has helped shift me toward "functional" in terms of stiffness, inflammation, pain, and fatigue management. I will be going on LDN (low-dose naltrexone) as well in the near future to see if there is any additional positive benefit.
 
U

unicorn7

Senior Member
Messages
180
gm286 said:
I stated I would update this thread when the time came. I guess I would just like to quickly mention that I have been back on a low dose of prednisone (5mg) indefinitely. I could not handle weaning off, all of my symptoms had returned. Just to be clear: I did not end up struggling with after effects or withdrawal, but with decade-old, familiar symptoms of inflammation, stiffness, low energy and weak muscles.

I had had about enough and asked a willing generalist to listen to me (once more) and not flinch at the simple fact of the matter that I required low dose prednisone to be well.

This, in addition to nightly use of Lexapro, has helped shift me toward "functional" in terms of stiffness, inflammation, pain, and fatigue management. I will be going on LDN (low-dose naltrexone) as well in the near future to see if there is any additional positive benefit.
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How wonderful that you found a doctor willing to prescribe!
Can I ask why you would use 5 mg prednison instead of 20 mg hydrocort?

I take 25mg hydrocort myself (and with advise of thingsvarious) spread it during the day to keep the negative effects to a minimum.
 
gm286

gm286

Senior Member
Messages
144
Location
Atlanta, GA
@unicorn7 It is a pertinent question...! Well... put quite simply: I suffered radically when I switched to hydrocortisone 20mg (at the request of a doctor). I have no longer followed up with her after literally being in the dirt for three-four weeks during December. The hydrocortisone did not work at all for me, not even when I raised it to 25mg, even 30mg.

The prednisone was the only thing that put a dent in what I was feeling. With HC, it was not even close, literally an instant return to a flare / crash. Think full-on PMR symptoms (polymyalgia rheumatic) with a heaping spoon of ME/CFS and a dash of fibromyalgia. I had been dealing with this for 14 years.
 
R

rocktot

Messages
5
https://www.hindawi.com/journals/crie/2016/4709597/
Thought Id post this here now if I cant make another post. My condition is really bad.
Found this as a possible cure, for someone. Im also on HC. I made a big mistake physically in June and it affected my ''secondary'' adrenals, sort of like the ''core''. I was on/off low dose'' HC for 8 years (safe use of Cortisol-book)IE: 35 or less.

Anyway. Im really messed up now and expecting adrenal shock will get me sooner or later.

But it caused me to look, yet again with google, and found this website with, ''a cure'', not treatment, for HPA axis (adrenal fatigue). Yes, its ADRENAL FATIGUE. because they get fatigued when your HPA doesnt talk to them. More or less, probably. ) At least for the person in the test.
Not sure what Im supposed to ''recommend'' if I end up in adrenal shock in hospital. Pituitary site says epi-pen I think. They also have a legal thing for if they don't want to treat you with that. Its a British site, like a major pituitary board, can t find it.

But Im still kicking just major bed bound for now, cross fingers.
 
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rocktot

Messages
5
Ok, not sure if anyone saw the link. This is a possible CURE, not treatment, for HPA (Adrenal) issues. Not quite Chronic Fatigue, but related. I have adrenal issues only (with thyroid ). The article talks about, if you can believe it, RU4-86, yea, the abort drug, or its counterpart. They seemed to have CURED a person who was on low dose Cortisol, suffering (HPA) Adrenal issues.

Its shocking to see this article is 5 years old, after years searching on the web, I happened on this ONE particular site. 5 tears old, a potential CURE (for HPA issues) and never saw anything about this on other sites, although my main Adrenal site was shut down 6 years or more ago.
https://www.hindawi.com/journals/crie/2016/4709597/


Not sure if Chronic Fatiguers are looking at HPA adrenal issues, they are sooo similar but different. Mine is definetively ADRENAL related as I can wipe out if I put heat over them, and Cort is the ONLY thing that really works.

I can mention Adrenal Insufficiency, but Im not allowed to say ''Adrenal Fatigue''. Like there is a difference. ???
 
thingsvarious

thingsvarious

Senior Member
Messages
120
rocktot said:
Ok, not sure if anyone saw the link. This is a possible CURE, not treatment, for HPA (Adrenal) issues. Not quite Chronic Fatigue, but related. I have adrenal issues only (with thyroid ). The article talks about, if you can believe it, RU4-86, yea, the abort drug, or its counterpart. They seemed to have CURED a person who was on low dose Cortisol, suffering (HPA) Adrenal issues.

Its shocking to see this article is 5 years old, after years searching on the web, I happened on this ONE particular site. 5 tears old, a potential CURE (for HPA issues) and never saw anything about this on other sites, although my main Adrenal site was shut down 6 years or more ago.
https://www.hindawi.com/journals/crie/2016/4709597/


Not sure if Chronic Fatiguers are looking at HPA adrenal issues, they are sooo similar but different. Mine is definetively ADRENAL related as I can wipe out if I put heat over them, and Cort is the ONLY thing that really works.

I can mention Adrenal Insufficiency, but Im not allowed to say ''Adrenal Fatigue''. Like there is a difference. ???
Click to expand...
Yes, a subset of CFS (a heterogeneous condition) is indeed just burnout/adrenal fatigue/adrenal insufficiency -whatever you want to call it. Sometimes also low levels of aldosterone and/or low levels of T3
 
A

AwakeButAsleep

Messages
35
I did. So my adrenal gland is likely to grow a little bit when easing into thyroid treatment. Will this be sufficient to not have to replace cortisol?
 
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