[jammom]

Hi! My name is Regina; I was diagnosed Jan 04 with SLE and Sjogrens. I have been very lucky in that I've just had a few flares and the SLE has mostly been in remission. I do have VERY itchy eyes and keep wondering if it is my Sjogrens or undiagnosed allergies.....
My big question is....a friend of mine has Cushing's disease (high cortisol) and is going to have her adrenal glands removed so now she will have Addison's disease (low cortisol) instead. Is this another autoimmune disease? Do any of you have it or know about it? I am very worried about her! :sad: Thanks for your help.

 

[raggedyann1]

Hello Jammom,

Welcome to The Lupus Site. You have found a really great place for support, encouragement and knowledge. How very wonderful that lupus is staying controlled for you. I can't answer about the itchy eyes as it is one of the things I don't have to deal with. Generally some medical professionals will blame almost everything on the disease process without further investigation. Was itchy eyes one of the symptoms that you experiencing when you were diagnosed or is it new? It is the time of year where those of us with forced air heat get very dry skin and other parts. Do you see your rheumatologist soon? It is something you will want to discuss with your doctor(s).

Yes Cushings and Addisons are auto-immune diseases. Diabetes is also an autoimmune disease. I am not totally aware of all the issues with either of them other than Addisons is treated with prednisone for the rest of a persons life. Encourage your friend to ask her doctors plenty of questions and just be there for her when she needs to talk.

Take care,
Karen

 

[mmair]

Hello jammom,

Welcome to the site! As for Cushing's disaease, no it is not typically an autoimmune disease. Cushing's can be caused by pituitary adenomas (ACTH secreating tumors) ACTH stimulates the production of Cortisol from the adrenals. This is the most common cause. Tumors on the adrenal glands (adrenal adenoma) themselves can also cause cushing's. Rarely cancerous tumors elsewhere in the body (Lung's, pancreas) overstimulate the pituitary producing to much ACTH and in turn to much Cortisol. Most likely in the case of your friend, an adrenal adenoma is the cause (therefore removal of the adrenal glands will cure the cushings). It is correct that after removal she will have Addison's. Addison's is however commonly caused by autoimmune disease (anti-adrenal antibodies). In your freinds case the Addison's however is not autoimmune (surgically induced). Addison's is treated mainly with Hydrocortisone (the naturally occuring form of Cortisol) generally doses are given 3 times a day (eg. 15mg-10mg-5mg) this simulates the body's natural daily cortisol production. Additionally a mineralcorticoid (Fludrocortisone) is given (also produced by the adrenals) which regulates the body's salt/water balance. Important is with Addison's that the patient learns to regulate the dosis of Hydrocortisone, in the presence of physical stress (surgery, illness, extreme sport etc.) the dosage must be increased (Cortisol is a stress hormone and would normally be increased in stress situations). A Cortisone identification card should be carried (Medic alert) A life threatening event known as Addison's Crisis must be treated immediately with injection of 300mg Hydrocortison or equivilent. Your freind should carry an emergency injection kit.

I have Addison's (caused by loss of the pituitary hormones ACTH) in my case this was indirectly caused by my MCTD/vasculitis. A reduced blood supply to the pituitary gland (caused by vasculitis event) damaged the pituitary (necrosis), it is no longer able to stimulate the adrenals to produce Cortisol. I also no longer produce other hormones which are stimulated by the pituitary (Thyroid hormone, Growth hormone, and the ovary stimulating hormones the lead to fertility and production of Estrogen/Progesterone.

I wish your friend good luck with the surgery, and treatments. Good luck to you as well.

mfG

Monique

 

[mmair]

Hello again!

Just a quick correction. Actually the most common cause of Cushing's (which most forget about!) is the administration of prolonged higher doses of prednisone (>7,5mg/day). This is called Cushing's Syndrome. Cushing's disease reffers only to tumors of the pituitary or adrenals. It is reversed upon reducing the Prednisone dosage.

Monique

 

[raggedyann1]

Mmair thank you for the additional information on Addisons and Cushings. I meant to say they can be autoimmune but are not always autoimmune.

Take care,
Karen

 

[jammom]

Thank you both for the information! My friend does have a tumor on the pituitary but it was not completely removable. So now she will have the adrenal glands removed. Is this a really hard disease to live with? It sounds very serious with all of the medications and adjustments to be made. Again, thank you so much!

 

[Raglet]

If your friend has her adrenals removed, then her Addison's will NOT be autoimmune, as it will be caused by the surgery rather than the activity of her immune system. For it to be autoimmune it would have to be caused by her immune system.

It will be surgically induced Addison's which is treatable, whereas the Cushings isn't, which I would assume is why they are doing it.

hth

raglet

 

[mmair]

Thank you both for the information! My friend does have a tumor on the pituitary but it was not completely removable. So now she will have the adrenal glands removed. Is this a really hard disease to live with? It sounds very serious with all of the medications and adjustments to be made. Again, thank you so much!

jammom,

No Addison's is not difficult to treat. It takes a little time to learn how to regulate the Cortisone dosage (how to interpert the bodys "needs") but after an adjustment period it is automatic. As a matter of fact (here in Germany) the disease Addison's is not recognizied as a disability, for example it would not be considered when applying for disability payments or a handicap ID. It is comparable to Hypothyroid (which can be good controlled with medcation) except with Addison's you don't need to have frequent blood levels of hormones checked!

LG
Monique

 

[Clare.T]

All the best to your friend ! I am sure you will be a great support to her as she goes through this.
I wonder if there is some misunderstanding though. I know your friend's disease may not be autoimmune but caused by a tumour although most of the time Addison's is autoimmune. However autoimmune Addison's is a very different disease from lupus. There are many autoimmune diseases, but most of them affect only one or mainly one, organ or system.

Lupus is not an endocrine disease; it is classed as a rheumatic disease, or rather 'connective tissue disease', because the joints are very commonly affected but it is also often multi system as it can also affect the central nervous system, the kidneys, the lungs, the veins and heart, the blood and even more

There are several Addison's support groups where you and your friend can get first hand support and further information.

In the UK Addison's meds are free because it is a life long condition requiring continual essential medication

Good luck

Clare