Wellness

[emmysmom]

On 6/9/2014 PpprMintPatty said:

My son has it on top of UC...not a good mix. They aren't sure if he always had it or if it was caused when he almost died in 2010.

Trying to taper off Prednisone after a UC flare-up is very difficult because his adrenal glands won't kick in.

I'm so sorry PpprMintPatty!

[emmysmom]

On 6/9/2014 addiegal said: I am on only replacement steroids which what your body would produce naturally. If you take too much then you get the major side effects but since your friend has the head injury she may be on more steroid as treatment for that or stress dosing( as normal bodies produce more cortisol due to illness or injury) which is needed in these cases. But I am surprised at the dep-medrol, that is not the usual choice for Addison's. It is used in injection for inflammation say in the spine. Methylprednisolone, prednisone or dexamethasone is more common for other inflammatory issues. The depo-medrol is much longer acting and stays in the system a longer time and builds up and causes more side effects. All of the above mentioned steroids are longer acting then Hydrocortisone ( bio-identical to cortisol) and some do use them for their regular replacement. The situations where the adrenal glands are remove is usually due to Cushing's Disease ( too much cortisol) but after surgery you are left with Addison's Disease. Also cancer can spread to the adrenal glands as well. Most Addison's cases are due to autoimmune attack to the adrenals and secondary adrenal insufficiency is due to the pituitary failing to produce sufficient ACTH to cause the adrenal gland to release cortisol. There is nothing other than replacement steroid to treat adrenal insufficiency or Addison's. Otherwise it is fatal. It is a serious disease but can be controlled with replacement steroids.

Addie, my friend wants to see another endo..what would you suggest she take? She really hates the depo medrol and the horrific side effects. Would you say the Hydrocortisone?? Being its bioidentical to cortisol, would that mean its better for the system, less side effects??? Thanks so much for your info~

[addiegal]

The hydrocortisone is the most used replacement steroid. But prednisone and methylprednisolone and even sometimes dexametasone are also used. The shorter acting hydrocortisone is better for most. It needs to be taken in two - three doses per day though. Does she take fludrocortisone as well as the depo? It is to regulate the electrolytes which are off because the adrenal also produce aldosterone which regulates sodium, potassium, magnesium and calcium. If that is needed she will feel terrible. Does she crave salt? I hope she can find a good endo to treat her. But if she is on high dose steroids because of her head injury she may still need it until that is treated. But hydrocortisone at 20 - 30 mg. daily is the usual replacement dose, then extra on top of that dose to treat other problems or illness, if needed.

[LilacTree]

On 6/9/2014 addiegal said: I am on only replacement steroids which is what your body would produce naturally. If you take too much then you get the major side effects but since your friend has the head injury she may be on more steroid as treatment for that or stress dosing( as normal bodies produce more cortisol due to illness or injury) which is needed in these cases. But I am surprised at the dep-medrol, that is not the usual choice for Addison's. It is used in injection for inflammation say in the spine. Methylprednisolone, prednisone or dexamethasone is more common for other inflammatory issues. The depo-medrol is much longer acting and stays in the system a longer time and builds up and causes more side effects. All of the above mentioned steroids are longer acting then Hydrocortisone ( bio-identical to cortisol) and some do use them for their regular replacement. The situations where the adrenal glands are remove is usually due to Cushing's Disease ( too much cortisol) but after surgery you are left with Addison's Disease. Also cancer can spread to the adrenal glands as well. Most Addison's cases are due to autoimmune attack to the adrenals and secondary adrenal insufficiency is due to the pituitary failing to produce sufficient ACTH to cause the adrenal gland to release cortisol. There is nothing other than replacement steroid to treat adrenal insufficiency or Addison's. Otherwise it is fatal. It is a serious disease but can be controlled with replacement steroids.

Addiegal, I have been taking prednisone for ten years for RA. I am now in the process of titrating from 10 mgs a day since last October to 6 mgs now, and my goal is to try to get to 5 mgs, which I've never been successful doing. I probably need several more months to get to that level. I have not been tested for Addison's, but I sometimes wonder if they, as another poster said, just don't "kick in," and that's why I can never get down to 5 mgs. Do you have any advice . . . you seem very knowledgeable. Thank you.

Also, if they don't "kick in," how can they be removed without that being fatal? Replacement steroids for the rest of one's life?

[LilacTree]

On 6/9/2014 emmiesmom said:

On 6/9/2014 PpprMintPatty said:

My son has it on top of UC...not a good mix. They aren't sure if he always had it or if it was caused when he almost died in 2010.

Trying to taper off Prednisone after a UC flare-up is very difficult because his adrenal glands won't kick in.

I'm so sorry PpprMintPatty!

I am too, PpprMintPatty. I can't imagine having both issues . . . my heart goes out to both of you.

[Shelbelle]

On 6/9/2014 Fortune said:

JFK had Addison's disease.

I just going to post this too, you beat me to it.

[addiegal]

When taking exogenous steroids for extended periods there is a danger of adrenal insufficiency, that is why you always taper slowly and give the glands time to "wake up". Sometimes they never recover and over time they will atrophy. But the adrenal glands are not removed for adrenal insufficiency only for Cushing's and I assume cancer but am not familiar with this scenerio. You simply take the cortisol you will be missing. I am only taking the equilevant of 6.25 mg. prednisone and do not have the side effects many see on large therapeutic doses. The 6 mg. you are taking is not too bad but I am sure you would like to taper on down...just take it slowly. Maybe a 1/2 mg. every month, but with your RA you don't want it to flare. Do you see lots of side effects on the 6 mg.? Good luck on your taper!

[emmysmom]

On 6/9/2014 addiegal said: The hydrocortisone is the most used replacement steroid. But prednisone and methylprednisolone and even sometimes dexametasone are also used. The shorter acting hydrocortisone is better for most. It needs to be taken in two - three doses per day though. Does she take fludrocortisone as well as the depo? It is to regulate the electrolytes which are off because the adrenal also produce aldosterone which regulates sodium, potassium, magnesium and calcium. If that is needed she will feel terrible. Does she crave salt? I hope she can find a good endo to treat her. But if she is on high dose steroids because of her head injury she may still need it until that is treated. But hydrocortisone at 20 - 30 mg. daily is the usual replacement dose, then extra on top of that dose to treat other problems or illness, if needed.

Thanks so much addiegal. I have copied the info and will give it to her. You are so knowledgeable about this disease. It looks like its a delicate balance. I wish you the best!

[LilacTree]

On 6/9/2014 addiegal said: When taking exogenous steroids for extended periods there is a danger of adrenal insufficiency, that is why you always taper slowly and give the glands time to "wake up". Sometimes they never recover and over time they will atrophy. But the adrenal glands are not removed for adrenal insufficiency only for Cushing's and I assume cancer but am not familiar with this scenerio. You simply take the cortisol you will be missing. I am only taking the equilevant of 6.25 mg. prednisone and do not have the side effects many see on large therapeutic doses. The 6 mg. you are taking is not too bad but I am sure you would like to taper on down...just take it slowly. Maybe a 1/2 mg. every month, but with your RA you don't want it to flare. Do you see lots of side effects on the 6 mg.? Good luck on your taper!

My rheumatologist told me that 5 mgs would be what the body would produce naturally, which is why I'm trying to get there. I would like to be totally off, but I doubt that is going to happen. I do still have side effects, mainly my thin skin/bruising, gross fatigue, and pain which I am used to. I can't imagine a day without pain, that's just not my life anymore. This is the slowest I have ever tried a taper, since I was at 10 mgs last October, eight months ago.

I will wait until probably mid-July to try the taper down to 5 or as you have suggested, maybe 5-1/2 mgs, since 5 has always given me a Mack Truck result (or flare, as you noted). I would like to think my adrenals will wake up, but I have been on this ugly med for ten years, even though it was never higher than 10 mgs. (Perhaps at the very beginning it was higher, but that did not last long.)

Even if I were able to get off it completely, I have no idea what would replace it. My rheumatologist is so disinterested because I said no to the biologics. They all have been the same, no interest in treating me.

[addiegal]

I think 5 mg. prednisone is at the low end of what the body needs...I was taught years ago the cut off was 7.5 mg. I am so sorry you are going through this and doctors can be so difficult. You have the right to chose not to take a medicine if you feel it is not best for you. Also, when ever you taper you will feel ( as you know) a lot of aches and pains until you adjust to that dose level. Tapers are not for sissies! Whether your adrenals are permanantly suppressed or not only time will tell...if they recover it will be a slow process and require patience. I have have taken steroids since 1882 and was first given them because I was thought to have lupus but I truly believe it was actually beginning adrenal failure. I almost tapered off in the late 80's but got down to 1.5 mg. prednisone (I think) and started to feel so badly the doctor said go back up to the 5 mg. where I started. I do hope this taper will be successful for you.