Has anybody tried Hydrocortisone therapy?

[sunlady]

Hi Wayne,

My eye disease is inflammatory, not parasitic.

This disease is usually found in Rheumatoid arthritis or lupus and causes swelling at the back of the eye,( this has previously damaged the retina and my optic nerve), as well as frontal swelling of my eyelid. Movement of my eyes causes arthritic like pain. I see it, excuse the pun, as part of the inflammatory disorder of ME. If I don't take the steroids to reduce the inflammation, I will go blind.

The normal levels of Cortisol and other hormones are disturbed by this illness, which in turn leads to inflammation in various parts of the body as part of the disease process. The talk by Dr Nancy Klimas given late in 2009 gives a very good explanation of what happens in our bodies with this vile and so misunderstood illness.

Thankyou for thinking of me, I will check out your link.

 

[samanthaellarose]

I've tried low dose hydrocortisone. I did badly on it. It caused me immuno-suppression and my infections seemed to go wild.



The 95% figure is rubbish. A minority of CFS patients do well on h/c. But many do really badly. If XMRV is the cause of ME/CFS (or even a passenger, though I don't see how that could happen), then I would be cautious taking hydrocortisone, as we know that XMRV has a glucocorticoid response element.

Oh my word, it's not just me! I thought I was the only person in the world that had reacted like this. I'm sorry for the reaction but since being on hydrocortisone and then prednisolone I've been immune-suppressed. Every infection I pick up I can't shift this includes a water infection and diarrhoea I experience these two things everyday now. I had very low cortisol shown on two salvia tests. I've been trying for years to wean myself off it but over the last couple of months I have had addisonian crisis symptoms and now just had a test for Addison's disease. I am again experiencing symptoms of addisonian crisis and will have to increase my prednisolone to at least 10mg prednisolone my doctor has told me! So I either increase my drugs and be even more immune-suppressed or stay on the same dose and possibly slip in to a coma or die. I am going out of my mind because I'm on a hormone thats destroying my immune system but also keeping me alive. I regret the day I started hydrocortisone, I'm more ill now than I was then. I am going to start immune stimulant supplements but rather scared to do this now. I want to find a compounding pharmacist to make natural cortisol. However Im in the U.K and I don't think there is such a thing as a compounding pharmacist. I was hoping natural cortisol opposed to synthetic would suit me better. I'm functioning at 10% I am about to start immune stimulant supplements but I'm pretty scared to try anything now. If anyone has any advise it would be much appreciated. I know everyone is battling with their own ill health but I would appreciate any advise. Thank you xxx

 

[Wayne]

Oh my word, it's not just me! I thought I was the only person in the world that had reacted like this. I'm sorry for the reaction but since being on hydrocortisone and then prednisolone I've been immune-suppressed. Every infection I pick up I can't shift this includes a water infection and diarrhoea I experience these two things everyday now. I had very low cortisol shown on two salvia tests. I've been trying for years to wean myself off it but over the last couple of months I have had addisonian crisis symptoms and now just had a test for Addison's disease. I am again experiencing symptoms of addisonian crisis and will have to increase my prednisolone to at least 10mg prednisolone my doctor has told me! So I either increase my drugs and be even more immune-suppressed or stay on the same dose and possibly slip in to a coma or die. I am going out of my mind because I'm on a hormone thats destroying my immune system but also keeping me alive. I regret the day I started hydrocortisone, I'm more ill now than I was then. I am going to start immune stimulant supplements but rather scared to do this now. I want to find a compounding pharmacist to make natural cortisol. However Im in the U.K and I don't think there is such a thing as a compounding pharmacist. I was hoping natural cortisol opposed to synthetic would suit me better. I'm functioning at 10% I am about to start immune stimulant supplements but I'm pretty scared to try anything now. If anyone has any advise it would be much appreciated. I know everyone is battling with their own ill health but I would appreciate any advise. Thank you xxx

My goodness, what a conundrum you're in. I truly don't know what solution might work for you. I might just mention that I did poorly on low-dose hydrocortisone when I did a generic brand, and also when I did a compounding pharmacy brand, both of which were bioidentical. But I did very well when I did the bioidentical cortisol in the Cortef. Go figure!

It sounds like discontinuation is out of the question for you. Perhaps your situation could be "shifted" if you switched from some brands you've been using, to some brands you have not yet tried. I'm sort of grasping at straws here, but sometimes you never know. I wish you the best as you try to navigate this delicate balancing act.

Best Regards, Wayne

 

[CBS]

...I am again experiencing symptoms of addisonian crisis and will have to increase my prednisolone to at least 10mg prednisolone my doctor has told me!

Hi Samanthaellarose,

I'm very sorry to hear that you are having to deal with such a difficult (frightening?) situation and what seems like a no win decision.

I'm writing because I have been on low dose hydrocortisone (10-15mg/day) for 16 years. It has helped me a great deal but I do appreciate that any corticosteroid has risks and that for many (most?) CFS patients it actually makes things worse. Last summer I went through a severe period of worsening symptoms which at several points became life threatening. My doctors were at a loss as to how to handle my hydrocortisone dose as it appeared to be helping to mitigate some severe symptoms (over a short period my dose was actually increased - at my doctor's direction) but the increased doses were not sustainable given the potential for immune suppression and other systemic complications.

In hindsight, it is clear that the increased hydrocortisone was useful in addressing an acute exacerbation of symptoms (primarily inflammatory) but that quickly ascertaining and treating the underlying issue (more accurately - a more fundamental underlying issues of infectious processes and associated autonomic dysfunction) so that I could get back down to a replacement dose was essential.

I'm curious about your current dose. Of course your physician needs to be making the calls on everything you do with all your meds but there is research that suggests patients using corticosteroids do much better with dosage schedules that more heavily weight the morning doses. There is also research to suggest that over a period of years, as little as 5 mg/day "too much" hydrocortisone (1.25 mg prednisone) is associated with side effects.

I also have questions (even more so now given that glucocorticoid response element in XMRV) about why my ACTH and cortisol levels are so low and why I fail to response appropriately to HPA stimulation and challenge tests. What I do know is that unlike many here, I do much better with a low dose of hydrocortisone and have to date shown no adverse effects (I see my endo every 3-6 months - I have a long list of other florid hormone deficiencies).

10 mg of prednisone is the equivalent of 40 mg hydrocortisone. Typical hydrocortisone replacement doses are in the 10-20 mg/day range. Are you seeing an endocrinologist?

Your situation sounds particularly difficult at the moment. My experience has been that the best course for my hydrocortisone replacement hasn't always been clear. In retrospect, a strong relationship with a good endocrinologist and having my primary care provider actively involved were key.

 

[traffy]

The main difference is strength. Hydrocortisone is only 1/4 the strength of prednisone. When taken in what are considered "phsyiologic" doses - less than what the body produces normally (37.5 mg. of cortisol/hydrocotisone per day) - it does not produce side effects like prednisone and other stronger corticosteroids. I take 15-17.5 mg/day - which would only equal about 4 mg of prednisone.



That's why it's the most common choice for treating adrenal insufficiency. But because it's not very strong, it's not used to treat more serious conditions like auto-immune disorders etc..



So - seems to be perfect for me as long as I stay on a small dose. Enough to be helpful but not harmful. At least that's my hope!

 

[taniaaust1]

In the past I tried hydrocortisone for several months but found even thou i have abnormally low cortisol (just out of the normal ranges), in my case it didnt help at all.
The dosage i tried was 10-15mg per day.

The CDC i think it was? done a study on CFS and hydrocortisone and came to the conclusion that it does help many of us esp with the morning fatigue (but didnt help with any of our other symptoms thou) but the benefit didnt outweigh the dangers of being on it.
In their study there low dose hydrocortisone was i think 25mg. They said one risks going into cortisol suppression with this medication (i cant remember now but this may of been particularly so for those with CFS)... hence risk of the serious issue of Addision's disease (which is permanent). So take care if you want to try hydrocortisone!! Its serious stuff to be experiementing with. (ones body can get used to hydrocortisone and make even less of it).
...................

Other 2 other studies ( think those were non CDC studies?) showed that ones with CFS had just as much benefit with 10-15mg of hydrocortisone .. as someone who takes more.
hence that is why when i trialed hydrocortisone, I choose to be on only 10-15mg per day. (I cant remember now.. i think i did also try 20-25mg for a couple of weeks. but no positive effects there either).

 

[Binky123]

Prednisone

I took prednisone for the 2nd year of my illness, 5-10 mg per day. It seemed to give me a 'floor' - I imagine this is due to the powerful anti-inflammatory effects.

I have been off prednisone for about 2 years now

 

[Wayne]

Low Dose Cortef/Hydrocortisone for Adrenals Jeffries Protocol

I believe I remember hearing at least one instance where somebody could not tolerate bio-identical cortisol (hydrocortisone), but did very well with prednisone. I think it had something to do with prednisone staying in the body longer, and not leaving a cortisol "vacuum" in the body.

I started a thread three years ago on the PH Board (entitled Low Dose Cortef/Hydrocortisone for Adrenals Jeffries Protocol) which received a lot of replies. It might be a good place to get even more perspectives on this therapy.

Wayne

 

[SaraM]

I had to take Cortef for a couple of months and I am almost 100% sure it ruined my gut to some extent. I never had muscle pain or food allergy before using Cortef. So, please try to be very careful with it.

 

[voner]

hi all:

i'm gonna start a trial of 5mg in the AM of Cortef.. starting tommorrow.

I'll report on it here, if there is interest.

 

[soxfan]

I was on cortef for 4 years...even though it never made me feel any better my doctor kept me on it. Now I am still in the process of weaning off. It has been extremely difficult and I have been tapering for 10 months now. It has caused me to have osteopenia among other problems. If I knew then what I know now I would have never started on this. I was on 20mg and am currently on 2.5mg.
If you can have the ACTH test done before you start the cortef..I wish I had.

 

[August59]

I was on cortef for 4 years...even though it never made me feel any better my doctor kept me on it. Now I am still in the process of weaning off. It has been extremely difficult and I have been tapering for 10 months now. It has caused me to have osteopenia among other problems. If I knew then what I know now I would have never started on this. I was on 20mg and am currently on 2.5mg.
If you can have the ACTH test done before you start the cortef..I wish I had.

Just an FYI because it doesn't seem as though there is much said about it, but if someone is taking "opiate" pain medication there is a good chance that your cortisol could be low or it can be normal. what is pretty universal is that these medications somehow shut down the ACTH process. My cortisol was right at the lower limit, but I had "0" zero response to the ACTH challenge test and was told that this is not uncommon. Of course, I don't take any doctors word anymore and did some checking to find that he was right. It's they same reason thet can effect testosterone, estrogen, thyroid and even DHEA resulting in lower levels.

 

[roxie60]

I took the HC back in February of 2009 and it was DISASTROUS. It over stimulated my adrenals real badly and then crashed them.
I got it on the advice of the Holtorf doctors. I don't recommend them or it.

How much were you taking a day?

 

[roxie60]

I just started cortef (hc) yesterday. I am still scared about taking it. So tired of taking pills.

 

[roxie60]

I was on cortef for 4 years...even though it never made me feel any better my doctor kept me on it. Now I am still in the process of weaning off. It has been extremely difficult and I have been tapering for 10 months now. It has caused me to have osteopenia among other problems. If I knew then what I know now I would have never started on this. I was on 20mg and am currently on 2.5mg.
If you can have the ACTH test done before you start the cortef..I wish I had.

An endo performed am ACTH STIM test and said I passed but my cortisol kept dropping every year. My llmd has put me on hc to support liw cortisol. I dont know who yo believe anymore.

 

[roxie60]

Hi Wayne--

I read that book by Jeffries, and it made total logical sense. Given the fact that my saliva cortisol tests indicated LOW cortisol, and that I had almost all the symptoms of adrenal fatigue, it was the logical conclusion that hydrocortisone (HC) would be helpful for me.

But the REALITY of taking HC turned out VERY DIFFERENTLY from the THEORY that it would be "good for me." In fact, HC was one of the two most detrimental things I have ever taken. (The other is iodine which I have written about extensively on another thread.)

HC OVER-stimulated my adrenals so badly that I ended up with the worst anxiety of my life, which lasted three months after I had stopped taking the HC. It also caused severe heart palpitations and arrhythmia, and greatly worsened my insomnia. The over-stimulating effects were followed by an adrenal crash, which brought me to a point of exhaustion much worse than where I had been before I began the HC, and which I am still recovering from more than a year later.

My point is be careful with this stuff. Not everything you read in a book will turn out to be the right thing for you. When HC turns out to be NOT right for you, it can be quite damaging. I am living proof of that.

How much hc were you taking?

 

[Wayne]

I just started cortef (hc) yesterday. I am still scared about taking it. So tired of taking pills.

Hi Roxie,

I've taken low-dose (20 mg/day) Cortef for about 15 years now, with no ill side effects. For me, it was truly a miracle, and gave me a much better quality of life. I was at such a low ebb before I started taking it, I estimated my body and cellular functionality at perhaps 4%. Before drifting off to sleep, I often wondered whether I would even wake up in the morning.

But I did have to start slowly. I don't know what you're starting out at, but if it feels like too much, or too stimulating, I recommend cutting back until you feel like it's supporting you without it burning you out. Also, if you're intent on raising your cortisol levels, a lot of people have found success taking licorice root (de-glyzzeried) (spelling?). It contains a substance that prevents cortisol from breaking down in the body, thus keeping cortisol levels higher.

Best, Wayne

 

[brenda]

@roxie60 if you post with @Dreambirdie which will notify her (she has been notified) I am sure she will get back to you.

 

[soxfan]

I can say I wish I had never taken it....It was my Lyme doctor who put me on it but when I went to see an endocrinologist who did the ACTH test told me that cortisol levels can change daily or even hourly depending on what is going on in your life/body. They are extremely unreliable as I can attest to. In a two week period of time I had the 8am blood cortisol (free cortisol) test done 2 weeks apart and one morning it was 24.8 and the other time it was 10.2 which makes no sense to me.

I also had the saliva testing done many times (4) and even though they were done years apart...my daytime levels never really changed even while on the HC. I found that very odd as well. I have all my test reports and the difference was tiny...off or on the HC. I don't think those tests are accurate either...at least mine didn't appear to be.

I think cortisol is extremely hard to regulate especially with pills. It was not a good experience for me so just be very careful of how much you are taking and if you don't feel a difference don't continue with them like I did....it was horrible weaning off of it.

 

[roxie60]

Hi Roxie,

I've taken low-dose (20 mg/day) Cortef for about 15 years now, with no ill side effects. For me, it was truly a miracle, and gave me a much better quality of life. I was at such a low ebb before I started taking it, I estimated my body and cellular functionality at perhaps 4%. Before drifting off to sleep, I often wondered whether I would even wake up in the morning.

But I did have to start slowly. I don't know what you're starting out at, but if it feels like too much, or too stimulating, I recommend cutting back until you feel like it's supporting you without it burning you out. Also, if you're intent on raising your cortisol levels, a lot of people have found success taking licorice root (de-glyzzeried) (spelling?). It contains a substance that prevents cortisol from breaking down in the body, thus keeping cortisol levels higher.

Best, Wayne

Thanks for the response Wayne. My llmd has me starting on 5,5,2.5mg so 12.5mg for a day. Morning noon and before 5pm