hydrocortisone

[heapsreal]

OK, since Im going down the adrenal fatigue line, im after some feeback on hydrocort experience.

Now from my understanding doses <20mg a day supposedly dont cause adrenal hormone suppression through negative feedback, any thoughts on this?

Now it seems that the normal dose is 5-10mg in the morning with another 5 mgs after lunch, this seems to be the norm. Using this treatment for a few weeks is suppose to 'rest' the adrenals and supposedly kickback into gear, has anyone had this experience or are they having to take hydrocort forever to maintain positive outcomes?

Also does this therapy help reverse a back to front cortisol secretion ie low morning cortisol and high night time cortisol levels to a high morning and low night time and thus improving sleep quality and quantity.

Lastly does this resting of the adrenals help improve dhea levels.

I appreciate any feedback. I have had good improvement with antivirals and immune system treatments but still have this residuel fatigue, exercise intolerence and sleep problems which i think is due to adrenal problems which has been shown in testing of my dhea/cortisol levels being low. If i could improve just my sleep i think would make big improvements and get me over the line into being normal.

I have also thought that its only been a short while that i have had my viral load down which would be the main stress contributing to adrenal stress, so maybe its just going to take time to rest and heal the adrenals. Maybe Im just inpatient.

cheers!!!

 

[ukxmrv]

Hydrocortisone didn't make any difference to me. I tried it for the first time in the early 90's I(?) when a study was published. Tried just a dose in the mornings with breakfast. Didn't see any difference. Then had cortisol tests in the 00's (blood and saliva). Very low cortisol in the mornings.

Tried it again. This time a dose before breakfast in the very low cortisol time and then one in the afternoon. Once again didn't notice any difference. No idea what is happening here in my case. Maybe not enough? I'll have to check my dose and post again when I find it.

DHEA the same. Tested low but supplementation at the dose I tried made no difference.

My main symptoms are viral (and yes, AV's help with that), PEM, weakness, dizzy, groggy, POTS, brain fog, neurological and many others.

XMRV+

 

[CBS]

I've been on low "replacement dose" cortisol since 1998 (10 and 5 mg). It made, and still makes, a huge difference in how I feel. Clearly I wasn't trying to rest "tired" adrenals. I had inadequate ACTH response to a challenge test and was diagnosed with secondary (pituitary) adrenal insufficiency. My endo feels the issue is not the inability to make a low level of cortisol, it is that when I do anything stressful, I don't have any reserve and my pituitary can't respond. I'm being watched very carefully by my endo. No signs of bone loss or other issues from taking an inappropriately high dose.

As for suppression of your adrenals and a drop in their capacity to produce cortisol, Always assume that even low doses can cause suppression. If you've been on cortisol for more than a week or two, come off of it slowly, keep hydrated and watch for signs of an adrenal crisis (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001397): Abdominal pain, Confusion or coma, Darkening of the skin (from high ACTH secretion), Dehydration, Dizziness or light-headedness, Fatigue, Flank Pain, Headache - a generally yucky flu-like feeling , low BP.

The risks for short term use of a low "replacement" dose as compared to a higher "therapeutic dose" are fairly minimal but still keep an eye out. Prolonged use at higher doses can cause serious issues; immune suppression and bone loss, leading to spinal and hip fractures.

 

[heapsreal]

Thanks guys, its not something i want to try straight away but have it on the back burner. Going to try a more natural approach first after poor response to other adrenal hormones. Its a shame because the first few weeks on pregnenolone i felt great, now i feel overstimulated and im not even using it, so maybe it has kickstarted my adrenals but its just not being secreted at the right times, i dont know????????

 

[heapsreal]

Any thoughts on prednisolone for a few weeks, i have read the conversion of 5mg of hydrocort is like 1mg of prednisolone. I just have access to 5mg tabs of prednisolone and could just use 1/4 of a tab, i think it may last longer then hydrocort as well so once a day dosing instead of 2-3 which is convenient???

 

[SOC]

FWIW, I've taken methylprednisolone (as Medrol Dosepack) in the past, but that was for brief periods with several months in between. Those periods were heaven for me -- the only times when I felt good over a period of several years. I was not given it for adrenal fatigue, though, so it may not be relevant to your situation.

 

[ukxmrv]

Pred was great for me to start with. A real lift but it eventually left me overhyped and then a huge ME crash with severe PEM. I still have some and take now and then. Obviously the big question for me is that it is doing to the XMRV and other infections.

Yes, once a day was fine for dosing.

XMRV+

 

[heapsreal]

Thanks guys, i think the whole hormone thing and xmrv doesnt seem to be put inperspective, i can understand excess hormones causing problems with xmrv but if running low on hormones then getting them into the proper ranges can only be good for your immune system, but i suppose time will tell.

sickofcfs did u find you were better for awhile after coming of medrol?
ukxmrv when u were on pred, was it the pred that made u 'crash' or did it give u extra energy that then got u going doing more then normal that made you 'crash'.
My thoughts are to use it for a week and a taper off for a week to rest my adrenals and while this is happening just do my normal everyday stuff without overexerting myself, then when off pred and hopefully feeling better, if i do too much i might be able to better judge if im overdoing then if i push while on pred. Any thoughts?? Also maybe just keep it on hand and use when in a 'crash' as this would probably be when adrenal hormones would be low. So using it in a very cyclic manner.

cheers!!!

 

[Dainty]

I'm currently starting hydrocortisone. FOr now it's too early to tell, starting at an extremely low dose.

I first tried hydrocortisol several years ago after testing low for it (forgot how low). It caused my heart to race so badly I couldn't get up, and was quite frightening to me. All the help I got was "start at a lower dose", but even the smallest amount I could measure caused this intolerable side effect. I abandoned it.

Recently a well-known rheumy fibro specialist decided hydrocortisone (can we call it HC?) would be a good route to go for me. He said my previous experience was caused by an imbalance of sympathetic/parasympathetic and in order to avoid that he had me start propranolol (beta blocker) first for 2 weeks and then start the HC, and then gradually increase both together. I'm not very far into it but so far I haven't had problems, and today is a really good day, so here's hoping.

I'm sorry I have no clue as to the dose right now, it's custom compounded into a liquid form and I'm only taking drops at the moment with "full dose" being 5 mL, if that's helpful at all.

 

[heapsreal]

keep us updated dainty, i will be watching out with interest. From some of the stuff i have researched, the people who react badly to adrenal hormones ie HC, dhea, pregnenolone(preg) are ones who have severe adrenal fatigue. I know my dhea levels were very low, but i will start of with the herbal type stuff for a month or 2 then look into hormonal stuff again. I have enough pregnenolone to sink a small ship as well so i might just give it the 2 months and try a small dose of preg and talk to my doc about HC. My symptoms to preg sound alot like your initial symptoms to HC sort of anxiety type symptoms, agitated etc, the only thing is its still going on to a lesser degree, but i feel like im heading down the right road with it, if that makes sense. Maybe i need the dhea with it to help balance out the HC. I did use a combo of dhea and preg and felt great for 2 days and then bang, agitation, insomnia headaches bla bla bla. I have used dhea in the past with no side effects other then increasing my estrogen levels. one thing for sure is that cfsers dont fit into a typical scenario, its all trial and error and frustration.

cheers!!!

 

[SOC]

Thanks guys, i think the whole hormone thing and xmrv doesnt seem to be put inperspective, i can understand excess hormones causing problems with xmrv but if running low on hormones then getting them into the proper ranges can only be good for your immune system, but i suppose time will tell.

I'm more concerned about the immune-suppressing effect of these drugs allowing XMRV (or any other infection) to proliferate.

sickofcfs did u find you were better for awhile after coming of medrol?

Yes, I felt best toward the end of the dosepack and then slowly declined (over several months) back to feeling lousy.

I think I was in a hyperimmune stage at that point and the Medrol made me feel better by reducing all the immune system activation symptoms, but I could be wrong. I wasn't diagnosed at that point, so no one was thinking about extensive labwork, etc.

 

[Dainty]

Okay I have more feedback for you now.

I'm not quite up to full dose yet, taking 5 mL and have 2.5 more to go. I think the concentration is 5mg per mL.

I've ditched the propranolol, I had a reaction to it and was planning to wait a bit and give it a second go but it turned out I don't need it! Yay! That is, I don't need it as long as I take my cortisol more slowly. I add water and then sip it with food inbetween bites and take it over the course of two or three small meals in the morning, if I take too much at once it results in restlessness and feeling very wired for a bit, which is fairly uncomfortable and wears me out....I'm literally pacing and feeling the overwhelming need to get out, but then I'm of course exhausted when the effect wears off. Not good. But taken slowly enough this issue is avoided completely for me.

Another thing is that though I've been instructed to take it at specific times, my body does not follow nromal schedules. At first I tried to use it at specific times and see if my schedule adapted to it, but when I was taking cortisol right before bedtime or waking up out of a deep sleep to take it, it just wasn't a good thing. So now I take it in my "morning", whenever that happens to be.

Also of note is that my current use isn't quite the way it should be, I ought to be taking some with my first meal of the day but I can't take the alcohol in it, so I have to wait until the alcohol evaporates out before I begin to take it, I try to leave it out overnight but even when I remember to do that it sometimes isn't enough, so I'm taking my cortisol later in teh day than I should. I have some new stuff now that has much less alcohol in it, so that should help. It shouldn't be an issue for anyone else since hte only reason this is in alcohol is becuase it's compounded, but I mention it because I'm currently not taking it "properly" and I hope to soon.

The first improvement that I've noticed when taking it that reconfirms itself when I don't take it is preventing my temperature plunges. It used ot be that my temperature would randomly plung as low as the 95 degree range, fignernails would turn blue, etc, and the only way to warm myself up agian was a hot shower. And I'd have to take multiple hot showers a day just to warm up. Taking the cortisol stopped that completely, and if I stop taking cortisol for a few days it comes back. The heat of showers is still nice for me, but thanks to cortisol they are now no longer a necessity, which means I can use the energy for something else if I wish. Score.

The other thing that is really noticeable is an experience I had the other day. I had been under a lot of stress and mentally overdoing it, and as a result I had a really bad crash. It was towards the end of my day and I got up to brush my teeth but instead I "came to" while trimming my nails, I couldn't figure out what had happened, why am I trimming my nails, I was going to brush my teeth? And then I was brushing my teeth when I noticed my feet felt hot and steamy, as if I had just taken a shower, but I had no memory of the shower. I knew I had been intening to take one...did I actually do it? All evidence indicated that I had, but again, no memory. My cognitive issue haven't been that bad in years, so I realized this was pretty serious. I went to sleep, and woke up the next day pretty bad off, predictably. Bedridden, could only type a few sentences between naps, that sort of thing. This was not my usual PEM, it really felt like a very serious crash.

And then I took some of my cortisol, and soon noticed that I was doing more. I told myself I still needed to rest, and get disciplined about it. I took more of that day's cortisol, and soon resting didn't even feel good to me anymore, I wanted to get up and do things like normal, and to my delight I found that I could. I was worried that this was "false energy" and was going to cause me to crash harder, but I genuinely could not seem to make myself rest any more, I felt slightly more exhausted than usual but other than that I was back to my normal baseline. If you had asked me that morning whether I thought that was possible I would have said no, but that's what happened. It's been I think 2 days since and life as gone on as usual without adverse effects.

So that's pretty exciting to me. Note that I have not experienced overall improvement, just that this one experience seems to indicate that it might serve to bring me back to baseline on particularly bad days. We'll see if it can be replicated.

I'm still uncertain as to whether or not it is helping with my Fibro pain. It's been a while since I've had any major flare-ups, it used to be that out of the blue I would have a week or so of really bad pain, and that hasn't happened in a while, but still not sure I can credit that to the cortisol. I do still have chronic widespread pain, and I get the pain in my legs sometimes severe enoguh to need strong medication, and other pain, so it's definitely not relieving all my pain, but if it holds my Fibro flare-ups at bay that would be lovely.

 

[PokerPlayer]

heapsreal,

I think I remember your name from the musclechatroom.com boards. I used that board too. I think that board is not very helpful for people with fatigue symptoms.

I tried to use hydrocortisone a couple months ago and it made me feel terrible. I already tested as having high morning cortisol, though. I would expect a bad response, but it is possible it could help, as you can read that it does help some people.

 

[heapsreal]

the musclechat room was just full of ego's, some good info there but not all of it relevant to cfs, i think we come under a different umbrella. I have found that hormone replacement is just to aggressive for my system, im persuing more herbal type remedies that arent so stimulating but more gentle. My last lot of blood work showed some small improvement, thats with siberian ginseng, astragalus, phosphatidylerine and one med arimidex which is an estrogen blocker which has helped improve my testosterone numbers. The herbs also have a benefit of helping to stimulate the immune system. the endocrine system is just one part of the body that go's out of whack with cfs, the hard part is getting it all together, the immune system, the adrenal/endocrine, sleep etc etc, its a big jig saw puzzle that keeps getting messed up just when u start putting the pieces together.

cheers!!!

 

[August59]

the endocrine system is just one part of the body that go's out of whack with cfs, the hard part is getting it all together, the immune system, the adrenal/endocrine, sleep etc etc, its a big jig saw puzzle that keeps getting messed up just when u start putting the pieces together.

cheers!!!

big jigsaw puzzle. a quagmire. a cluster &^& and a SNAFU all rolled into our endocrine system!! I think heapsreal is as close to figuring this out as anyone can be. It's probably going to take frequent labs to keep balanced, but I believe that this endocrine balance will be "critical" for support of any succesful treatment. This includes anitvirals as well as just taking them may make the virus diminish, but it is not going to miraculously correct all the imbalances we have.

The later statement is assuming that viruses (not just xmrv) are playing a part in ME/CFS!

 

[heapsreal]

a cluster &^& is a real good way to describe it august59 LMAO! Last night i just couldnt sleep, i even took some seroquel which is my desperation med i save for times of really bad sleep, i felt groggy but couldnt fall asleep, i was tempted to take a benzo but they havent worked the last couple of nights so why bother but my brain was sizzling. SO i just kept it natural and took some tryptophan which i have done the last few nights but with no real luck and some melatonin and it must have been enough to turn the switch off and i slept 9 hours, wow!! its nice to stop the brain sizzles.

I think this tired wired thing is from cortisol not being controlled by dhea as my dhea levels are crap and also the body/mind of a cfser always seems to be adapting to what we throw at it. Phosphatidylserine, tryptophan etc had been giving me good sleep for a few weeks and then stopped working and the last few nights it hadnt worked but then the combo of trypto and seroquel did the job, for now. Plus that one crappy night with sick kids snow balled into 4 crappy nights in a row, cortisol keeps pumping to keep u going even when u dont want to go, we need time to just stop and recover and cortisol just doesnt let us do that. I might just have to spend the money and buy the overpriced dhea from here as customs will keep grabbing my cheap dhea from iherb, also have to look at some sort of rotation with my supps to stop my body adapting to them too, bugger!

cheers!!!

 

[Boule de feu]

I'm not sure if this is related to what you are saying but it might be important:


Judy Mikovits:
Correct. Its a simple retrovirus which means its expression, the On or Off, is controlled by, and weve just learned this, its unpublished data, by just 3 things, the response to Hormones, the response to Inflammatory Cytokines, its called an NF-Kapa B element. So Cortisol, the Stress Hormone turns on the Virus very rapidly and continues to have it expressed. So do Inflammatory events as caused by other Pathogens and so do Hormones like Androgens and Progestins also make sense with regard to Inflammatory Prostate Cancer and the disease being more prevalent in women. (http://www.xandxmrv.com/news/interview-with-judy-mikovits-and-annette-whittemore-about-xmrv.php)

Does it mean that if you try to increase your levels of cortisol, you are also increasing the production of XMRV?

 

[heapsreal]

maybe, but when people talk about using hydrocort tey are talking about rplacing low levels to a normal level, not above normal. cortisol does have a valuable effect on the immune system, obviouslt toomuch is immunosuppressive and hydrocort therapy is something to talk over with your doc. All hormone therapy stuff is looked at replacing it to a healthy normal level which should enhance immune system, going over this would then cause increases in growth of infections tumors, cancers etc but the right amount enhances the immune system, low hormones reduce the function of the immune system and overall vitallity. Hormones arent black and white and cortisol is is seen as anti-inflammatory which u would think would benefit xmrv but then its immunosuppressive, then androgens like testosterone counteract cortisols anti-catabolic effect and enhance anabolism, too much anabolism could cause other things to grow and multiply.

Personally i think we need to keep these hormones in balance and replace what we need and seriously look into estrogen dominance which is a problem for males and females and is a risk factor for alot of cancers, heart disease and growth of possible pathogens, so maybe google estrogen dominance, i think this maybe or biggest hormone road block, the other hormones are easier, just keep them in balance the best we can. hope this makes sense. alot of cfsers are sensitive to hormone replacement so u might end up having to look into herbal treatment and treating things like adrenal fatigue etc, but its only a part of the jigsaw/cluster^&^. Also trying to control high cortisol can be difficult too, so we need more tips in this department.

cheers!!!