If it s a red face and neck from pred, than that is actually steroid induced Cushing's syndrome. It means the steroid dose is a bit high - your body is not always using all the steroid and the excess is causing Cushig's. The pred can also cause diabetes as well. Even low vitamin D.
Sometimes the long term use can make the adrenals atrophy - so once you wean down the adrenals no longer function. So you are stuck with AI and the worst of both diseases. I had pituitary source Cushing's not resolved by surgery and so had my adrenals removed - so I have lived both high and low cortisol. My BP stays low with both high and low cortisol with is uncommon, but not unheard of. Fatigue happens with both high and low cortisol.
You need an endo to wean you down off the pred (it will not be pleasant) and find out if you have another source of the corticosteroids (that happens) and a rheumy to find an alternate treatment as you are sensitive to the corticosteroids. You have a lot going on - and they are related and one is not going to get better without coordination from another. I know a lot of people that have diabetes resolve once Cushing's is resolved too!
I have Lupus, and when I have a flare up, I usuall get the red face and neck. I now get it a lot time, it just happens. I am on a large dose of Vit D, due to it being low in my last couple blood test. I also have been told I have an adrenal insufficiency following surgery, and am given injections of hydrocortisone after an operation. My Rheumatologist said he felt it might be caused by long term Prednisone use. It seems to be occuring now with me having short periods of severe head sweating, lower blood pressure, and a sick feeling, when I am exhausted or stressed. I have not had the test for the adrenal insufficiency, because the Endocrinologist I started with, said he wants to work first to see how my insulin deliver from my pump can be fine tuned before we see what else is going on. Please give me any suggestions, so I can understand what is happening. MJ
Unless it is the fillers or whatever in the meds - not sure... talk to doc or pharmacist?
Hi.. i was recently diagnosed too with adrenal insufficiency and hypothyroidism too. I have this rash on my neck as well and it is becoming somewhat painful.. I am on daily dose of hydrocortisone and DHEA. Does anyone have any suggestions of what i can put on this annoying rash... My doctor thinks it could be the meds but warns i must continue to take them. Ugh...... help
I have the redneck thing too. my ankles break out but hydrocortisone cream helps relieve it but not cure it. it does notthing for my neck. going to see doc friday.
I have had a sunburn like rash on my face since October. It does not go away. I am hypothyroid. I hae not checked my cortosol or my vitamin d levels but I have fought a long, hard, tramatic battle with neighbor who has been smoking us out with an outdoor wood furnace. The plumes are three stories high and two houses wide at times...for hours and he has been burning painted and treated wood. It has been very scarey as we have migraines, difficulty breathing, and severe heart palpitations due to this large smoke machine. He has not been able to burn for two months but the rash will not go away. I will check the adrenals too...it has been high stress, maybe that is what it is.
By wacky cortisol levels, what do you mean?
Is it after you take medications?
High cortisol levels sometimes can create a red face or other parts - mine used to come and go... do you know when this happened and what was happening at the time?
Hi, I have had 6 episodes of sunburn type rash on my face, head, arms, trunk and back that lasts 20-40 min, I am not sure why? but I do have adrenal fatigue, cortisol levels that are wacky, is that what is doing this
Hi Norma,
Thanks for the post. My husband has been definitely diagnosed with the adrenal insufficiency/addisons; and also is hypothyroid and has low testosterone levels according to his tests. The Dr. actually has him diagnosed as polyendocrinopathy, with all of the above under that. Hubby is on meds, and finally is starting to feel better; he was diagnosed in late Feb of this year, and according to his Dr., he is "quite a challenge"...We do kinda have the nickname of the "Murphy's Law" family...and this has been no exception, to say the least. It has taken several months and trials and errors, but it seems as if he is on the right track, now. We feel so blessed that he has such a great Dr., as a matter of fact, the Dr.'s wife also has adrenal insufficiency, so the Dr. really knows "first hand", so to speak about it, too. I am so glad I found this site, and wish all of you to feel better.
Take Care,
Calam
Hi..........I was diagnosed with Addisons disease in 1978........and it was mainly by the Dr. seeing the " tan " all over the body.......no bilkini line......I hope if this is what your husband has.......he is treated for it......promptly.........he will start feeling better.......which is I'm sure.......something you both want......Best of luck to you both.........peace and love.......Norma
My husband has also been diagnosed with Addisons disease, and he has the dark red appearing skin on his neck. It also sometimes appears to have little bumps, like "chicken skin", but it does not ever itch. When he first saw his Dr., the Dr. said, "Hmm, I think we may need to check you for adrenal insufficiency"; with the Dr. saying that the dark red or "tan" appearing skin can be a sign/symptom of adrenal insufficiency.
I have a rash also round my neck, I have had this since end of May it was worse and I have tried everything for Chronic Urticaria , I think mine was caused by Trauma as I had major Dental work that went wrong, since then I have battled hives, I am having some success doing my own research and using natural supplements, I have found useful information here and on the Complementary medicine Forum, I am taking Adrenal support capsules and Kelp drops(Iodine) and started a dhea course of tabs yesterday, I feel a lot better than I have done for months, but I still have the rash, I think the metal allergen is still in my mouth and will have to go through a procedure to get it out.as I may be allergic. This was all from a crazy dentist .
I just getting into more on the cortisol issues and other endocrine imbalances. I am a Hashimoto thyroiditis patient and experienced that quite often. My neck and chest was very red all the time.
I still have a bit of it left - it still is red - but not as bad as it was.
Due to the Hashimoto tests ( TPOab) my doctor was able to see that my antibodies were raised and suggested taking selenium to calm them down
I have noticed a decrease in the redness since starting on that.
Were you tested for autoimmune thyroiditis?
Hi.........I read your description of your rash problem........and I don't know if this will be of any help to you.......but....I have had Addison's Disease since 1978........and have been taking a maintenance dose of hydrocortisone since that time........I just wanted to tell you that since that time.......I have lived with a neck rash that looks exactly like a severe sunburn.........right in the front area........and it never goes away........Just thought you''d like to know......I'm also hypothyroid.......and have been treated for that......almost as long.........my very best to you in finding out the cause of your disturbing symptoms.........peace and love.......Norma
Thank you for your input (much appreciated). I did get an answer from Dr. Lupo on here last night and he did indicate that low Cortisol can indeed cause rashes. Ironically today was the day of my ACTH stim test and the nurse there said that low Cortisol can cause the skin to do strange things so perhaps it translates different ways to different people. I'm hoping that my medication begins to help me in that fashion because I am pretty sure they will prescribe Hydrocortisone. Ironically I felt better after the injection which was unexpected today. I was just hoping to not get an allergic reaction to the ACTH however I felt better which was not the reaction I expected, so that spoke volumes for me in terms of having adrenal issues. He did also say that Hashimoto's goiter can cause a bit of a rash and I do have one though it's not visible (it can be felt). He was nice enough to help me with some of the questions I had so at least now I have some direction. This is a wonderful site!! :)
I've never had a rash due to low cortisol level in my life and I've had addisons or CAH all my life depending on how u look at my situation. So my levels have went too low before.