After following all the advice on HU about reducing my prednisone dose very slowly, I got stuck at 4mg a day. A synacthen test then showed that I wasn’t making enough cortisol of my own and so I am now stuck on steroids for good. My medical notes now state that I have iatrogenic Addison’s - I understand that that means a disease caused by my medical treatment.
How concerned should I be? My GP was cheerful and reassuring “it just means that you can’t give up the tablets, but you’re on a small dose.”
Has anyone had a similar diagnosis and still managed to get off the steroids? Are there any questions that I should be asking at my next Clinic visit? Any warning signs? It seems that every step forward in Vasculitis is followed by a step back.
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BronteM
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There are several people on the PMR/GCA forum with the same problem as you - but I think it is fair to say that if your adrenal glands are not able to produce cortisol you are very unlikely to get off the pred. It is the same as any other replacement therapy - for hypothyroidism after radiotherapy or for Type 1 diabetes. You don't get to stop them.
Because it is a replacement therapy you are unlikely to have pred side effects - they are due to excess corticosteroid and you won't have an excess, just the amount you need to function.
It's a shock at first. Another problem to deal with
I am also adrenal insufficient. I assume your seeing a specialist.
I see an endocrinologist every 6 months in clinic. The nurse gave me lots of advice re. illness such as vomiting diarrhea, accident, on my first appointment and a hydrocortisone injection kit and a emergency wrist band. I need 7.5mg to keep me stable, apparently each person needs a different dose to maintain adrenal function.
I always carry extra prednisone, just in case and a letter from clinic.
Thank you. I do carry my medical information on my phone, but it looks as though I should be a bit more careful.
Hi BronteM,
I would push for a referral to an endocrinologist. Although secondary Addisons is slightly different to primary there may still be " sick day rules " that are important to follow and they will know more than the Vasculitis clinic.
Thank you very much for that link, Keyes. I’ve been fairly laid back about this as the LVV seems more important, but it looks as though I should be asking more questions.
Unfortunately Addison's disease and secondary Addison's is poorly understood by non specialist NHS staff ( sound familiar! ).
Patient knowledge and education are key as KirstyW1999 has alluded to, that's what ensures safety.
In general I am not sure there is enough education about the secondary diseases and co morbidities that patients with Vasculitis and other auto immune diseases can be prone to. I have developed quite a few as well, I count myself fortunate to have managed to wean the pred after 2 yrs though.
Hopefully you will feel an improvement in your symptoms once your cortisol levels are optimum.
Yes Keyes is right most health care professionals don't understand this condition. I was told by gp and clinic Dr. I didn't need injection kit prior to seeing endocrinologist for first appointment. I had researched and found on an official site, the dangers if you don't carry one.On my first appointment to endocrinologist I was given a kit and all the information.
Please put to see the the endocrine clinic.
It is similar to diabetes and your body will not survive without it.
Good luck, wishing you all the help and support you need.
Hi, I have GPA and was diagnosed with secondary addisons in 2016 i tried to come off pred and got down to 3mg and started to feel very unwell. I am now taking 7mg of pred.
My mother who is now 90 was diagnosed with primary Addisons in her 70s so i knew a bit about it. I had been given very good advise when i was diagnosed about sick day rules and doubling and emergency injections.
Unfortunately just before Christmas i was having trouble with my stomach, i have had an ileostomy for many years and have suffered many intestinal obstructions,i had 4 obstructions and each time i had to use my emergency injection. Before that i had a chest infection and again had to use an injection.
Everyone is different but i found i go into crisis very quickly i am sick and pass out but the injection works very quickly for me. I think having so many other medical issues causes me a greater problem. My mother has never had this problem.
I would suggest you look at the Addisons self help group website it gives very good information. Be aware though that some Doctors and Hospitals are not very up on Addisons,my husband had to give me one injection which we had taken with us to the hospital as the nurse didn't want to do it, and on another occasion when i was on a medical assessment unit i had to explain to the nurse in charge what the injection was, how to use it and what would happen if they didn't give it to me. It was very concerning.
Thank you everyone for your well informed comments. I will try to follow them up, though my first try today didn’t go very well.
I had a Vasculitis Clinic appointment today, and raised the matter there; in particular how important it is, whether I should take any extra precautions, carry a card etc. But I was told that it really isn’t a big issue and I should just carry on being conscientious about taking my steroids. I take 5/6 a day at the moment.
Anyway, things are more complicated because the MRA that I had in November has shown up gallstones! The results of the scan haven’t yet gone to my GP (?) so now I must chase all that up. I’ve been complaining about an increasingly uncomfortable abdomen on my right hand side for the last few weeks, so it’s quite nice to have a probable reason. But I’ve just tried to get a GP appointment and there is nothing until March unless I go to see the nurse or one of the new trainees...and I don’t think that they are the most sensible option at the moment.
Under the circumstances I would present myself at the surgery and inform them you wish to see someone about it asap. Mind you - nurse no, but to be fair, the trainee GPs are not really babies, they have completed their medical training, worked for at least 2 years in the hospital and done their GP training. In fact - you MIGHT find them more receptive and even enlightened.
Oh dear BronteM, the ironic thing is that is the type of thing that an Endocrinlogist might say about Vasculitis! It's very easy to be dismissive about something when you don't fully understand it.
I will have a look and see if I can come up with any clinical guidelines regarding secondary Addison's.
Thank you Keyes, that would be very helpful. I ended up just going to bed, very uncomfortable after too many inadequate seats and 2 hours on the train, and thoroughly cross! Feeling more positive this morning...
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