addison's disease - Page 3

LilacTree · ‎03-25-2012

On 6/10/2014 addiegal said: 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.

Thank you Addie, and I'm sorry for what you have had to go through. It seems I am OK at 6 mg. It doesn't affect my pain levels which remain the same and which I am used to. I will try to get to 5 mg, but if I can't, I can't. I'll just have to accept that at my age, I will probably be on prednisone until the end. A couple of docs have told me that, so it's probably likely.

Thanks again.

Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986

Iluvlucy · ‎03-09-2010

On 6/9/2014 addiegal said: PpprMintPatty, with your sons UC it is so much more difficult as he will always need to treat the UC to keep stable even with the Addison's and he will always need the prednisone on top of the replacement steroid he needs to control his Addison's. The body usually needs 5-7.5 mg prednisone as replacement for the Addison's on top of the extra taken to treat the UC. I am sorry to hear of your son's Addison's and it is much harder if you have another illness. All my best to him.

Thanks addiegal!

He has gone on a medication that sometimes puts UC patients in remission, and, so far, it seems to be working. It has many risks too, but he was to the point where he's willing to take them for some quality of life. They monitor his blood once a month now(it was weekly at first) so hopefully his body will tolerate it.

He's been through a lot in his 27 years...it's so hard to see your child that sick and not be able to do anything about it. Two 20-somethings just died from UC last month, people don't realize what a horrible disease it can be.

Iluvlucy · ‎03-09-2010

On 6/9/2014 Ford1224 said:
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.

Thanks ladies! It's been a roller-coaster ride, that's for dern sure!

PhatCat · ‎03-10-2010

I take Cortine by Thorne, it is bovine based.

Annabellethecat66 · ‎03-12-2010

I'm beginning to think that is what my daughter and I have. She just had 1/2 of her thyroid removed (mass in it) and I have to have half of mine removed.

However, I am going to look into Addison's disease. Thanks you for a possible heads up.

emmysmom · ‎06-22-2010

On 6/15/2014 annabellethecat said:
I'm beginning to think that is what my daughter and I have. She just had 1/2 of her thyroid removed (mass in it) and I have to have half of mine removed.

However, I am going to look into Addison's disease. Thanks you for a possible heads up.

I hope not Annabelle! Hopefully removing your thyroid will be enough. I am sorry you and your daughter are going through this!

Don't cry for a man who's left you--the next one may fall for your smile.
-- Mae West

addiegal · ‎06-09-2014

Annabelle, are you thinking you are autoimmune polyglandular type 2? This can involve Hashimoto's thyroiditis, Addison's, ovarian failure. Please do not take any steroid before you have been tested for Addison's otherwise it is very hard to get the proper diagnosis. It can be difficult at best...a lot of doctors never seem to think of it. It is rare but not so rare it never happens! I hope you do not have it.

addiegal · ‎06-09-2014

Look for an inappropriate tan when you have not been in the sun. This is a hallmark symptom of Addison's. Craving salt as well as low blood pressure, nausea, vomiting, diarrhea, loss of appetite, noticable weight loss are a few of the symptoms.

LilacTree · ‎03-25-2012

On 6/10/2014 addiegal said: 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.

I can only hope and cross my fingers. So far I'm still doing ok on the 6 mgs. But going to 5 mgs still scares me. I've been to an endocrinologist and he took blood and said it was normal. Does that mean I don't have an adrenal gland problem? Aren't there other tests he should have taken? As I said, the rheumies aren't interested. Who should I go to?

I do not have anywhere near darkened skin, I am white as snow actually. And I have no cravings for salty food. I stay between 125-130 weight-wise and my BPs are usually between 117/65 or so and 135/82, depending on the time of day. I get more of the lower end than the higher end though. And aches and pains I surely have. Recently my orthopedist said they weren't from osteoporosis, but from the RA. I don't know what to believe.

It's true that doctors seem to pooh pooh anything with the adrenals. I don't know how they can do that when someone has been on prednisone, even low dose, for ten years.

Thanks for your posts Addiegal, they are very informative. And thanks for your good wishes also.

Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986

addiegal · ‎06-09-2014

Ford, if you do have a problem it would be called secondary adrenal insufficiency. With this it is the pituitary causing the glands to not release cortisol due to lack of ACTH stimulation. There is no "tan" in secondary nor salt craving. Adrenal insufficiency whether primary or secondary is diagnosed through an ACTH stimulation test. It is not accurate if you are on prednsione or hydrocortisone but can be done by switching to dexamethasone for at least three weeks before the test is done. I know so many doctors aren't familiar with adrenal disease but an endocrinologist treats these disorders. But not all of them are that experienced as they've had so few cases. The one I went to wanted to take me off prednisone after about 20yrs. to test me...I did not go back to him and told my internist I would rather he treat me. I did have the tan, as well as other symptoms. I hope you do well on your taper but if you need the 6 mg. that is not a high dose. I take what equals 6.25 mg. prednisone. To look at me you wouldn't know I was taking steroids.