Addison's disease : I have just had a new diagnosis of... - NRAS

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Addison's disease

Adelaide1 profile image
15 Replies

I have just had a new diagnosis of Addison's disease...I was diagnosed with RA 13 years ago and have blamed any health problems on that. I now find I have another autoimmune disease. Does anyone else suffer from both these conditions?

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Adelaide1 profile image
Adelaide1
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15 Replies
allanah profile image
allanah

Not Addisons but RA, Diabetes, poly cystic ovaries, asthma . Got one auto immune disease and the others followed like buses!

Hope you get sorted out and feel better quickly xx

Sorry you have Addisons as well as RA now - I met a woman with this and epilepsy on a self management course last year. She explained that she has to take a high dose of steroids always and that it is the adrenal glands not working I think? It sounded pretty bad to me but she was very philosophical about it.

I seem to be collecting various add ons like buses too but not sure what they all are. So far I've been diagnosed with Hypothyroidism, RA, Raynaud's and Sicca (Sjogrens). I'm waiting impatiently to see a neurologist to find out what is causing severe parasthesia in my arms and legs. Twitchy x

allanah profile image
allanah in reply to

Oh yeah forgot my Sjogrens on the list lol

Jane06 profile image
Jane06

Addisons must be quite rare as I have never come across anyone who has it (and I have been nursing for 30 years). Like Twitchyties, I also have RA & Hypothyroidism, but also developed autoimmune hepatitis 2 years ago. I have been on steroids ever since. I also went through menopause early (42) which in my mind, was also autoimmune! Hope you are getting the right treatment.

Smith7 profile image
Smith7

I too am sorry that you have Addisons as an extra. have Ra, Sjorgens, Underactive Thyroid, Pulmonary Fibrosis and a couple of weeks ago Fibromyalgia was added to my list. I don't think why me, but Why.

parkie profile image
parkie

Hi Adelaide. ...I was diagnosed with Addison's Disease and stills disease ( rare form of RA in 2009/10. I hope you aren't having the problemsI have. As Addisons +Stills both need steroids, I'm on a high dosage, , which causes problems.

tinlizzie profile image
tinlizzie

Hi there,

I have Addison's in addition to RA (42 years), coeliac, Sjogrens and osteoporosis and some RA related lung issues.

J F Kennedy had it apparently. It can be primary or secondary (sometimes from steroid treatment).

Steroids are for life and if the body is under stress from infection, surgery etc, they have to be increased to avoid a crisis but it isn't so difficult for me as I am now aware of it, so it's better since diagnosis.

Addisons.org.uk are a good source of information as doctors don't come across it too often.

Wishing you luck with the treatment

Adelaide1 profile image
Adelaide1

Thank you for your reply...I am relieved to get the diagnosis as I have felt so unwell...obviously a bit anxious about coping with it. Did the steroid cause weight gain?

The woman I met with Addison's was skinny as anything if that helps? I think she explained to me that the steroid is replacing adrenal function so more like taking insulin for diabetes rather than steroids for RA perhaps?

AngelWings profile image
AngelWings

Dear Adelaide1. So sorry that you have been diagnosed with Addison's. My aunt on my father's side had RA & Addison's. It's where the adrenal glands are not working. I have RA, Hypothyroidism, Pernicious Anaemia, Vitamin D deficiency, Asthma, on Metformin for raised glucose (Type 2 D) Scleroderma, Urticaria and SLK. All of these are triggered by RA. Like Jane06 I also had early menopause at 41, which I put down to the autoimmune problems. I think steroids will probably be part of your life. The advantage of this site is that you can always find someone with a bit of helpful knowledge. I wish you well and good luck :-) x

This all seems so scary! I was diagnosed first with hyper thyroid, years later, R.A. Then fibromyalgia. The thought some other disease may follow is unsettling to me. I'm so sorry you have all those medical issues. Wishing you and others to feel better.

Titchyj profile image
Titchyj

Hi adelaide1, sorry you have had another disease added to your list. I have been on prednisolone for over 3 years for sarcoidosis of the lungs, started at 30mg and reduced over the last 12 months to 5mg, with the hope of coming off them altogether. To do this I had to have a special blood test which was taken early morning in the hospital ward then I was given an injection to stimulate the adrenal gland, followed by another blood test, I think 30 or 60 minutes later.( sorry brain fog affecting memory).

When I got the results the consultant said that my adrenal gland was not producing enough cortisol and that I would have to take more steroids, so I am now on 7.5mg per day. He did say he would re-test again, but as of yet not had this done. I was not told it was Addison's disease though.

I have had Lichen Sclerosus for about 10 years or so, this is autoimmune, Fibro for about 14 plus years, asthma for 7/8 years, sarcoidosis of the lungs 3 1/2 years, type 2 diabetes 3 years, sero negative rheumatoid arthritis with possible diabetic neuropathy in hands and feet, since December 2013, also osteo arthritis in hands, feet, knees since October 2013.

Please could you post when you get further test results, I will chase my GP, consultant for a re-test.

Greatly appreciated.

Jan

Jbsa70 profile image
Jbsa70

Hi Adelaide 1,

How are you doing now, a year since your Addison's diagnosis? I have been diagnosed with Addison's this year and I have also Hashimoto Hypothyroidism (had that for 35 years now). I live in the UK and I have found helpful addisons.org.uk self-help online group.

Best wishes

Jana

Adelaide1 profile image
Adelaide1

Hi Jana

Still struggling on...my steroid insuffiency/addisons symptom are eased..I am on hydrocortisone now, but my RA has been dreadful. And I have gained some weight which is a pain.

My rheumatoid consultant hasn't been too helpful...but I am hoping that she will be able to find a way to calm the arthritis.

It's difficult because I have had a couple of good years and now feel it's got out of control again...

I'm sure It will improve again!

Gotta keep positive.

😀👍🏼

OriginalT profile image
OriginalT

I see this conversation is quite some time ago . I've just joined the forum and read this. I was diagnosed with Addisons disease nearly 3 yrs ago. A life if hydrocortisone and fludricortisone plus Hypothyroidism can be pretty challenging. I think the more autoimmune diseases you have the worse you feel as the fatigue and reaction to various meds like long term steroids take their toll on the body.

What's really disappointing is the lack of research and new meds Treatment is 40 yrs old.. A combi pill of long acting and fast acting steroids became available 4 yrs ago but the NHS hasn't taken it up for giving to Addisonians here in UK. This pill would make our lives so much better as it would mimic the circadian rhythm that a working Adrenal gland does throughout the day. It also has a faster absorption so not peaks and troughs like we normally get.

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