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I replace ALL my hormones. This brought me back to life. But is it sustainable for decades?

Alvin2

The good news is patients don't die the bad news..
Messages
3,046
I am also curious to hear more about cortisone acetate vs more common cortisones.

Regardig long time use: a Rheumatologist recently mentioned that newer research shows that long time use higher than 5mg Prednisone is more dangerous than earlier assumed. A person I know with rheumo diagnosis has been told to stay as close to 5 mg as possible for a daily dosage, but during symptom flares increase to 40mg and slowly go down again.
Yikes.
Its been known for a long time that Prednisone for long periods has many nasty long term effects, i am hesitant to even try it even if it might help some symptoms.
 

thingsvarious

Senior Member
Messages
120
Of course. I talk about new recommendations of dosages even for those who absolutely need it.
...prednisone has a long half-life and is also devoid of mineralocorticoid activity necessitating the replacement of aldosterone via fludrocortisone. Furthermore it is very suppressive to the HPA
 
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bertiedog

Senior Member
Messages
1,745
Location
South East England, UK
...prednisone has a long half-life and is also devoid of mineralocorticoid activity necessitating the replacement of aldosterone via fludrocortisone. Furthermore it is very suppressive to the HPA

I have been on between 6mg - 7 mg Prednisolone for 20 years because of adrenal insufficiency and ME but I don't need fludrocortisone except when its very hot and I am sweating a lot and then only half a tab for a coupe of days. It gave me some sort of life back. I still get PEM but it usually only lasts a day before I recover and I regularly do over 8000 steps a day so obviously I am biased that if you need it then its a wonderful drug.

The main side effect I have is that I bruise easily and my skin is probably a bit too thin but to be honest that is a small price to pay because without it I would never have got off the couch and probably would rather have not been alive. BTW I am 73 now and my GP always comments on how well I am doing compared with his average patient of my age.

Pam
 

thingsvarious

Senior Member
Messages
120
I have been on between 6mg - 7 mg Prednisolone for 20 years because of adrenal insufficiency and ME but I don't need fludrocortisone except when its very hot and I am sweating a lot and then only half a tab for a coupe of days. It gave me some sort of life back. I still get PEM but it usually only lasts a day before I recover and I regularly do over 8000 steps a day so obviously I am biased that if you need it then its a wonderful drug.

The main side effect I have is that I bruise easily and my skin is probably a bit too thin but to be honest that is a small price to pay because without it I would never have got off the couch and probably would rather have not been alive. BTW I am 73 now and my GP always comments on how well I am doing compared with his average patient of my age.

Pam

Glad that the prednisone is working for you. If it were me, I would be kind of afraid because, in my opinion, 6-7mg is supraphysiological for most people. Still, if lower doses do not work, the risk of not taking it (missing life) does seem higher

How long have you been on that dose?
 

bertiedog

Senior Member
Messages
1,745
Location
South East England, UK
How long have you been on that dose?

I have been on a dose of between 5.5 to 7 mg for 20 years and the DEXA scan I had in 2012 showed I had the bones of a 30 year old. I do take lots of daily supplements and still take low dose oestrogen.

The dose I take is quite typical for someone who has adrenal insufficiency especially when they also need thyroid medication like I have to. Natural desiccated thyroid tends to use up cortisol so one needs a slightly higher dose than somebody who doesn't need thyroid hormone.

At the moment I am doing a ridiculous amount of steps because its gardening time and I still have to take my dog out in the afternoon. I do rest in between but I know it cannot last and I will crash for an odd day or so which is very frustrating but I am grateful I can at least have some sort of good activity although it isn't guaranteed of course.

Pam
 

thingsvarious

Senior Member
Messages
120
I have been on a dose of between 5.5 to 7 mg for 20 years and the DEXA scan I had in 2012 showed I had the bones of a 30 year old. I do take lots of daily supplements and still take low dose oestrogen.

The dose I take is quite typical for someone who has adrenal insufficiency especially when they also need thyroid medication like I have to. Natural desiccated thyroid tends to use up cortisol so one needs a slightly higher dose than somebody who doesn't need thyroid hormone.

At the moment I am doing a ridiculous amount of steps because its gardening time and I still have to take my dog out in the afternoon. I do rest in between but I know it cannot last and I will crash for an odd day or so which is very frustrating but I am grateful I can at least have some sort of good activity although it isn't guaranteed of course.

Pam
Why prednisone and not HC?
Also, what is your DEXA now?
 

Gingergrrl

Senior Member
Messages
16,171
Natural desiccated thyroid tends to use up cortisol so one needs a slightly higher dose than somebody who doesn't need thyroid hormone.

Pam, I apologize if I have already asked you this a million times before, but does natural desiccated thyroid hormone (like Armour) always use up Cortisol or are there instances when this is not the case?
 

bertiedog

Senior Member
Messages
1,745
Location
South East England, UK
Pam, I apologize if I have already asked you this a million times before, but does natural desiccated thyroid hormone (like Armour) always use up Cortisol or are there instances when this is not the case?

No you haven't asked me this a thousand times Gingergrrl! To be honest I don't know the answer, its just something I have read probably years ago and does seem to pan out when I look at doses on the Addison's forum. It also seems to make a difference what other health conditions one might have.

I think I might have been told this by Dr Peatfield when I consulted with him when first diagnosed. He said I could go up to 7.5 mg without any real issues if I needed it. He was extremely knowledgeable about hormones and wrote a book about how to treat thyroid disease primarily. I remember him saying that the saliva results that I had showed there was a longstanding issue because I had sky high DHEA and lowish cortisol. Once I got on treatment which then was around 5.5mg Pred we rechecked the DHEA level and it had dropped down to normal at all points of the day and night. Originally when I was on h/c I used it up to quickly and had no coverage overnight with a subsequent raised DHEA still.

I learned a lot from him about hormones and also how our individual differences showed how it couldn't be a one size fits all approach.

Sorry I cannot be more helpful but I guess the individual bit would fit with you?

Pam
 

bertiedog

Senior Member
Messages
1,745
Location
South East England, UK
Why prednisone and not HC?
Also, what is your DEXA now?

I have answered your question regarding h/c above.

My GP doesn't think its necessary to recheck the DEXA because the result was so good but unexpected. I think the fact I still take some oestrogen, take the natural thyroid hormones plus an excellent diet and added supplements should mean things are still good.

Pam
 

bertiedog

Senior Member
Messages
1,745
Location
South East England, UK
Pam, I apologize if I have already asked you this a million times before, but does natural desiccated thyroid hormone (like Armour) always use up Cortisol or are there instances when this is not the case?
Forgot to add that the dose of the thyroid medication would also play a part. I take 2 grains plus 0.25 mug thyroxine but if one was on a lower dose then that could affect the dosage needed of h/c. I don't know if the same applies to just thyroxine, I would think it wouldn't because T4 is a storage hormone whereas the T3 is active within minutes or at least an hour at most with Armour and similar preparations. One has to have relatively good adrenal function in order to tolerate thyroid medication but especially anything that contains T3.

Pam
 

Gingergrrl

Senior Member
Messages
16,171
No you haven't asked me this a thousand times Gingergrrl! To be honest I don't know the answer, its just something I have read probably years ago and does seem to pan out when I look at doses on the Addison's forum. It also seems to make a difference what other health conditions one might have.

I'm glad that I hadn't asked you that a thousand times! You have been so helpful re: Cortef and endocrine issues in the past and I couldn't remember if I'd asked you that before. My Endo definitely mentioned that stronger adrenal functioning was needed when we last increased my Armour but I wasn't sure if he meant in my specific case or if this was a rule that applied to everyone who takes Armour (or other dessicated thyroid meds).

I think I might have been told this by Dr Peatfield when I consulted with him when first diagnosed. He said I could go up to 7.5 mg without any real issues if I needed it.

Do you mean 7.5 mg of Cortef or Prednisone? I have never taken Prednisone and my current daily dose of Cortef is 10 mg. I will be re-checking my labs in mid-May and hoping that my ACTH & Cortisol will have increased (but am suspecting that they will not have).

I had a high dose of IV Solu-Cortef a few weeks ago during a minor surgical procedure (as a stress dose) and I am wondering if this is a factor in how I am feeling now (although it was a one-time dose and it seems like my brain & adrenals should be back to "normal" now). And by "normal" I mean for me and not for a true normal person :xeyes:.

I remember him saying that the saliva results that I had showed there was a longstanding issue because I had sky high DHEA and lowish cortisol.

That is interesting and mine is the opposite. I have very low DHEA (below the "normal" range on blood tests) in addition to low ACTH & low Cortisol. My Endo said that DHEA is the last thing within the sequence of hormones to normalize and that once my ACTH & Cortisol increase then DHEA should follow (this was not his exact words and I hope I am remembering it correctly)!

Sorry I cannot be more helpful but I guess the individual bit would fit with you?

You are definitely helpful!

Forgot to add that the dose of the thyroid medication would also play a part. I take 2 grains plus 0.25 mug thyroxine but if one was on a lower dose then that could affect the dosage needed of h/c. I don't know if the same applies to just thyroxine, I would think it wouldn't because T4 is a storage hormone whereas the T3 is active within minutes or at least an hour at most with Armour and similar preparations.

I always forget what "grains" mean (since my thyroid med is in milligrams) but I just Googled it for Armour. I take 60 mg of Armour each morning which seems to be "one grain".

One has to have relatively good adrenal function in order to tolerate thyroid medication but especially anything that contains T3.

This has to be part of my problem and I do not have good adrenal functioning (although the cause seems to be that I have pituitary suppression of ACTH, which in turn leads to the low Cortisol) so I think my actual adrenals are okay, but the outcome is the same if that makes sense?
 

bertiedog

Senior Member
Messages
1,745
Location
South East England, UK
Do you mean 7.5 mg of Cortef or Prednisone?

Yes I meant Prednisolone.
That is interesting and mine is the opposite. I have very low DHEA (below the "normal" range on blood tests) in addition to low ACTH & low Cortisol

That is a more normal pattern and doesn't indicate a long standing problem whereas the very high DHEA was interpreted as long standing and also indicated a messed up pathway. The body knew I needed more cortisol but it was unable to provide it and instead produced a load of DHEA instead. I think I have now found out a possible reason for this in my case and that is I have 2 SNPs on the hormone pathway that converts pregnenalone to progesterone and then to cortisol/DHEA. Its a rare condition called Congenital Adrenal Hyperplasia due to a deficiency of 21 Hydroxylase enzyme, late onset. I have at least one SNP with the salt wasting form which causes a loss of sodium in a crisis situation or in my case when its hot or if I have a tummy bug.

This explains why I passed out in2005 when I had come off the steroid because my body seemed to be able to manage without it. However I developed uncontrollable diarrhoea and vomiting and within a couple of hours I passed out on the toilet and couldn't get off the floor. Everything was black and there was nothing in my body. It was extremely frightening and if I had been on my own I could have died. I think I did mention this to you in the past and it was after that I knew I would never be able to come off a steroid. It is obviously an extreme case but it goes to show how serious it is if one's body cannot cope with insufficient cortisol in a crisis situation.
always forget what "grains" mean (since my thyroid med is in milligrams) but I just Googled it for Armour. I take 60 mg of Armour each morning which seems to be "one grain".

Yes that is correct so I am on 120 mg of natural desiccated thyroid plus 25 msg thyroxine.
This has to be part of my problem and I do not have good adrenal functioning (although the cause seems to be that I have pituitary suppression of ACTH, which in turn leads to the low Cortisol) so I think my actual adrenals are okay, but the outcome is the same if that makes sense?

Yes that makes perfect sense. From reading on the Addisons' Forum it would seem a few can lead a normal life on 15 mg h/c but they are the minority. People's doses are all over the place with some really high and other around 26 mg h/c so it really is individual. Some of the Endo's request a 24 screen to see how much cortisol if actually in the blood over a 24 hour period and then adjust the dose accordingly. Again there seems to be wide variations.

Hope this helps and that you soon feel better.

Pam
 

Gingergrrl

Senior Member
Messages
16,171
That is a more normal pattern and doesn't indicate a long standing problem whereas the very high DHEA was interpreted as long standing and also indicated a messed up pathway.

That is interesting and I did not realize that my low DHEA (plus low Cortisol & low ACTH) were part of a more "normal" pattern. I guess all of it is just suppressed in my case?

This explains why I passed out in 2005 when I had come off the steroid because my body seemed to be able to manage without it. However I developed uncontrollable diarrhoea and vomiting and within a couple of hours I passed out on the toilet and couldn't get off the floor. Everything was black and there was nothing in my body. It was extremely frightening and if I had been on my own I could have died. I think I did mention this to you in the past and it was after that I knew I would never be able to come off a steroid. It is obviously an extreme case but it goes to show how serious it is if one's body cannot cope with insufficient cortisol in a crisis situation.

I definitely remember discussing this w/you in the past (when I was attempting to taper off Cortef). I had an episode at that time when I was at a store and got very shaky, hot, confused, stomach pain, muscle pain, and thought I was going to faint if I didn't sit down. It was not a POTS episode or allergic reaction and it improved w/taking Cortef. My doctors (at that time) definitely felt it was from the Cortef taper and that I caught it early enough that I was able to reverse it w/taking oral Cortef (before it reached an adrenal crisis and would require IV Solu-Cortef or other steroids).

I stayed at that Cortef dose for several months before resuming the taper (which took over 2.5 years). But once I was fully off Cortef, I started having those symptoms again plus extreme fatigue & sedation and lack of stamina. My blood work at that time showed undetectable ACTH and almost undetectable Cortisol. So I had to resume Cortef and now take 10 mg per day. I have multiple reasons why I would still love to come off Cortef completely but I no longer think it is possible.

Yes that makes perfect sense. From reading on the Addisons' Forum it would seem a few can lead a normal life on 15 mg h/c but they are the minority. People's doses are all over the place with some really high and other around 26 mg h/c so it really is individual.

Is the forum that you mentioned only for people with an actual diagnosis of Addisons (which I do not have) or is it for anyone with pituitary and/or adrenal suppression of ACTH & Cortisol? I would love to get more feedback from others who have taken Cortef for years if they have ever found a way to successfully & safely taper off of it.
 
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