I have just spent a very interesting hour reading about possible adrenal insufficiency but none of the examples seem to reflect my own experience. So, I’ll explain what is happening to me. I was diagnosed with PMR 8 years ago and, like many people, have had a very interesting experience with many ups and downs during that time. I have currently managed VERY slowly to reduce to 3mg Pred per day but am now feeling very unwell. Apart from the return of pain in my neck and both shoulders, I have very bad fatigue but also now have an extremely unpleasant skin “rash” which covers all of my body, apart from my waist down to the top of my legs. But by far the worst problem is the fact that my body seems to feel very hot and I feel as if it’s trembling. I have been given co-codemol and have seen a dermatologist about my skin - just steroid cream! Of course, in an ideal world I would be able to discuss it with a doctor but they just look at me with sorrow because I’m now an old lady!! So, once again I ask you lovely folks whether you feel it could be associated with adrenal insufficiency and whether an increased dose would help?
Thank you - AGAIN. 🙏
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Janann25
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Have you actually got a raised temperature? Does the rash itch? DId it start suddenly or over an extended period of time? And what do you define as "old lady"?
No, my temperature is normal, the rash doesn’t itch, the rash started 10 months ago! During the last 10 months, I’ve had two “non-conclusive” biopsies, two private consultations with a dermatologist who has no idea what it is but who has booked me in for yet another biopsy (and yet more money!) at the end of January. Nobody has shown any interest in the burning/trembling sensations. And I’m 84 years old.
My hands sometimes shake but not badly. It’s more the feeling that I’m shaking inside. I’m most concerned at the moment as to whether the 3mg Pred is too low and whether it would be suitable to take extra?
Have you tried upping it a bit to see if you feel better at a slightly higher dose? The whole idea is to have a better quality of life and if you feel noticeably better at 5 instead of 3mg - at your age you have earned it! I have always insisted on the dose that leaves me feeling well and able to function acceptably - otherwise life wasn't worth living. It isn't any use living a few years longer if those years are rubbish is it?
Totally agree. I’ve decided to increase my Pred and see what happens. And after Christmas I’ll start being a real nuisance about my health. I just n ed to know what’s causing the trembling and burning. If it’s something that can’t be cured/helped, then at least I can settle down to dealing with it.
Not good enough to say it is old age. It might be a condition more common in old age but not just old age. Would they put up with the suffering if it was them having been told it is because they are old?
What is the rash like? Is it raised or under the skin?
The rash is weird! It started as red blotches on the back of my legs 10 months ago and within a few weeks had spread over my legs, my arms, my chest and my back - and developed into raised lesions which my GP thought was eczema. Unfortunately, 10 months of steroid cream has made my skin like paper. I’m having another biopsy at the end of January but I’ve no idea whether this is related to the burning sensation!
Sorry for delay in replying. No, I used to have one but he signed me off because, at that time, 5mg seemed to keep me stable. Unfortunately, my GP prescribed the usual days of high dose when he thought my rash was Excema and I found it difficult to drop back immediately to my normal dose. Hence the tapering
No, this is what I don’t understand and is the reason I decided, reluctantly, to see a dermatologist privately. She didn’t know what it was but said not an allergy and decided I needed yet another biopsy but she’s so busy she can’t do it until the end of January. My skin is SO fragile, I dread the next biopsy.
I do get a bit annoyed at the way some GPs work on a trial and error technique with a default to steroids for skin and Naproxen for any pain ... I don't like how you get signed off totally from a rheumy either - then you have to start from scratch to get to see one if anything goes pear-shaped.
It sounds like a very difficult experience— even so you are keeping good spirits!! More power to you for that!! about a year ago I had a severe problem in my foot— it looked like eccema— the gp recommended steroid cream and my foot got much worse when i used it—my skin got bluish— i went to the dermatologist and it turned out that because I am already on 3.5 mg prednisone—my skin cannot heal with steroid cream— this is not the first time this has happened to me— the dermatologist gave me other non- steroid creams and as soon as I stopped using the steroid cream I started healing— and it did so beautifully — You may consider trying creams that have no steroids. All the best to you and may your rash completely go away!
Thank you for your kind reply. Yes, I’m learning more and more that doctors are inclined to prescribe on a “one size fits all “ basis and it definitely doesn’t. I’ll keep on investigating!
Hi JanannWhen I got under 5mg I was exhausted to the point I could barely move. Mainly around 2mg.
As for a rash I got one on my leg, not as severe as you. Again not itchy but nasty looking. I too saw a dermatologist and biopsies were done and they said eczema but the creams never worked. 2nd biopsy done and it turned into a different type of eczema. 2nd cream didn't work. They then put me on high dose of prednisone which allowed me when I reduced to drop lower but still didn't work. 3rd biopsy and again it morphed into a different eczema again. They put me on a totally different cream and it worked.
Apparently all the other creams and steroids made things worse so the rash spread.
Never had eczema in my life but it runs in the family.
I too had pmr 8+yrs and I found other illnesses were popping up at low doses of prednisone. 1st trigger fingers, eczema, OA which they are still figuring out.
Thank you. I found your post so interesting because it mirrors so much my own experiences - the biopsies and the various creams. Also the various other problems which keep popping up. I will be relieved to get the outstanding biopsy done at the end of January and just hope there are some useful results.
Some people are already well into senior years when diagnosed so I think they they already had some ailments like OA etc.Fir myself I was diagnosed just before senior years and by the time I was done I was in my senior yrs. I believe prednisone masked my OA and other ailments. So it's a rush of everything at once vs a slow progression.
Somedays I just feel enough is enough. I medical appointment after another. I specialist after another. I just want to get on with life.
It will be 2 yrs this January and things are getting better. Keeping my fingers crossed.
I always feel better in the hot sun so can hardly wait to leave to go south. The warm weather and the ocean does me wonders.
Hi there sorry to jump in on someone’s chat but I was interested in your question whether the rash itched or not? I was diagnosed with PMR two years ago and have tapered from 20mg to 7 about a month ago. In that month I have developed a skin rash in my lower back - which is itchy. Interested in your take on this please
Have you tried antihistamines? It isn't an uncommon occurrence for people to develop allergies that are managed by the higher doses of pred but as they taper down to this sort of level they reappear again so that is always worth considering. My allergy was to wheat starch - not gluten but the starchy part of flour. Higher pred and antihistamines did a great job - I could even eat normal bread and spahgetti! I was fine with spelt, kamut and rye but normal commerical pasta and bread were a problem.
Yes, on the advice of a pharmacist when the rash first appeared, I tried antihistamines but with no effect. I still feel that an underlying allergy COULD be the cause but the dermatologist is adamant it’s not that!! If there are no results from the biopsy at the end of January, I shall use my hard-earned savings on getting allergy testing instead!
So sorry for the delay in replying. So many kind people have taken an interest in my experiences that somehow I missed your own - sorry. In answer, no my rash doesn’t itch but I’ve had it so long that the combination of Prednisolone and steroid creams have left my skin very fragile and that in turn can cause irritation Please don’t leave the rash without investigation, I would hate for you to have to go through the trauma of trying to get it sorted.
The tiredness does sound like the adrenals waking up (or complaining about it). Are you saying the doctors are giving you no advice? I really sympathise. Did the steroid cream for your skin work? Have the doctors checked your blood sugar, blood pressure etc etc? It does sounds like they may be fobbing you off. Doctors tend to assume their diagnoses are correct unless you go back and complain, although in fact the first diagnosis can quite often be wrong. I suppose in a lot of cases people don’t come back as they just get better.
I have to admit the doctors aren’t really interested. I’ve had two blood tests and have merely been told “all ok”. I check BP occasionally and averages 135/76 so I presume that’s ok. The steroid cream hasn’t helped - all it’s done is make my fragile skin (8 years of Pred!) even worse. It’s just so depressing when nothing seems to help. I think I’ll take some extra Pred for a couple of days and see if my general feeling of being unwell actually improves.
I had a situation where I had a rash and every time they prescribed a cream it didn’t help. It turned out I was allergic to a substance in the cream called propylene glycol. I only found this out after I had skin testing for allergies. I went to a skin doctor who was a noted sleuth about unusual rashes. I also found out I was allergic to black rubber, neomycin. Cobalt chloride and something else I forgot, but I have the list so my my allergy list. You might get temporary
The dermatologist seems uninterested in the possibility of allergies and I haven’t yet gone down that route because it’s even more expense and am still paying privately for the dermatologist appointments! As I said to PMRpro, I just need to know WHAT it is.
You may have to go on at your doctor and say you still have problems and what do they recommend? I must admit I have been forced to go private sometimes.
As I understand, Dirt4 isn't suggesting Long Covid but Long Vaccine syndrome. However - any vaccine (or the illness they are to protect against) can be the final trigger for PMR/GCA as well as other autoimmune disorders so I would dispute it is even a "thing" - just a new name for something that has been around since long before Covid existed. Anything that puts a stress on the immune system could have the same effect. And Long Covid itself is the same - just the numbers have made the medical world in general sit up and take notice.
I got down to 6mg from 15mg and like you felt really unwell and fatigued. I had a number of symptoms including tender scalp, headache, ear pain, painful face and sensitive teeth. I had all these symptoms with every drop of 0.5mg but as the dose got lower the symptom severity increased and went on for longer they were almost constant at 6mg and I also started to get a burning sensation mainly in my face and around my hairline but it was in other parts of my body as well at a lesser degree . I was worried the symptoms were GCA a concern I've had throughout this PMR journey but rheumatology didn't think it was🤷. Long story short I ended up back on 10mg which is where I am at the moment. The general consensus is I'm adrenal insufficient and symptoms are related to this ,I'm not sure?I'm seeing the endocrinologist soon to discuss a plan for getting off steroids so we shall see.
I hope you find some answers to your problems good luck.
You ARE adrenally insufficient - but 6mg pred is loads to suppress the production of cortisol naturally so the tests are bound to show adrenal insufficiency. You have to balance the dose of pred to keep that at a dose that is enough to manage the PMR but is low enough to stop the suppression of cortisol. It is a very difficult at this stage.
All you can do to get off pred is to continue to taper VERY slowly. No endo can wave a magic wand, the only option is a switch to hydrocortisone which remains in the body for less time and that is felt to encourage the adrenal production of cortisol. But if the PMR is still active, HC is far less effective at controlling the inflammation than pred and for some people has even more unpleasant adverse effects.
i too developed a skin rash at 2mg. Mine is slightly itchy. Though thankfully it has not gone all over the body. I have found that using Cuticura slightly medicated moisturising soap (it is a blue colour) helps. Have no idea of the cause (except steroids) and normally I have a very good skin. I am sitting it out at the moment as it has not worsened. I really smpathise and hope you receive some help soon.
I am so sorry that you are going through continuous challenges. I am on 9 years now and they keep on coming don’t they? I wondered if you had tried an Antihistamine for your rash. If they worked it might indicate an allergy. Medication allergies can come on even after a few months. It happened to me with Alendronic aacid. I have had the same experience with a horrible rash. Biopsy says it’s an “autoimmune disease…see rheumatologist . Rheumatologist says dermatologist problem. After2 years I have decided it’s a “hasn’t killed me yet, ignore it problem.” I also have the internal tremor, diagnosed as essential tremor and I have chlonazapam that helps when it’s bad. I saw a neurologist for that. It’s so sad to hear you don’t have any medical support. I agree, get aggressive after Christmas. There are some good ones out there. I also agree with giving yourself a Pred boost for the holidays. Very best wishes.
Thank you so much for your very kind reply. I tried an antihistamine (on the advice of a pharmacist) not long after it started but to no effect. I was interested to hear that you’ve been given an explanation for the internal tremor. Unfortunately, not one doctor has even shown any interest in the tremor, much less tried to diagnose it! Because I’m now under the care of the dermatologist, no other discipline seems to want to get involved. Like you, I try to console myself that the rash hasn’t yet killed me but I’m still wondering what exactly is wrong with me to cause it. I’m beginning to doubt I’ll ever get an answer.
If you look up ‘shaking’ and adrenal insufficiency, you will see that SHAKING is A SYMPTOM. OF A ADRENAL INSUFFICIENCY CRISIS. Please look and ring 111 - although 111 is not always helpful. I went to my private Rheumatologist because the surgery was hopeless.Best of luck and do keep us posted.
Sorry to hear about your rash - I have been seeing GP about redness and mild rash on face, along with one very red lower eyelid and some swelling of both eyelids. I put it down to thinning skin at first and ignored it hoping it would not get worse. I looked it up and thought it might be 'steroid induced rosacea' which is apparently known to affect eyelids as well as cheeks. GP was receptive to considering the idea and took a photo to se nd to the dermatologist. I'm awaiting the verdict and diagnosis.This seems pretty minor compared with your issues, but does illustrate that all sorts of other disorders can creep in once you're on low doses.
Yes, I think quite a few “ailments “ could be kept at bay with higher doses of steroids. I know a friend of mine didn’t realise how bad her arthritis had become until she reduced her dose. It then kicked in really badly. I never thought the day would come when I could find something positive to say about the side effects of steroids!!
Like yourself I am eight years into PMR and was just about managing my life at 3mg while struggling with a fatigue that I had never experienced before. By 5oclock in the afternoon I felt faint and jittery and I often felt brain dead for hours in the mornings.
Fearing spoiling Christmas for myself and family I have upped my dose of pred to 5mg and am feeling SO MUCH BETTER, Almost well. I’m not sure what I will do after the Christmas activities but for the time being I’m enjoying having energy and enthusiasm.
Luckily I don’t have a rash. I hope you get over yours soon.
Twice during my tapering from 20 mg prednisone to 7 mg, I have had a raised, scaly rash. I put aloe vera gel on it and it cleared up overnight both times. I believe you can buy it at most drugstores without a prescription. Doesn't tell you what caused it, but it went away and I was happy with that.
My initial thought was that the pred may have been masking something else that has emerged as you lowered the dose, and then I see that you have had the rash for 10 months.
So I wonder if the doctor has ruled out it being caused by another auto immune condition, which you could have along with the PMR? I hope he did anyway, considering your medical history.
I was going to suggest that you check out online what the rash for celiac disease looks like (properly called dermatitis herpetiformis), but that wouldn't explain the shaking, unless the shaking is to do with the adrenals and from a separate cause. I tend to bang on about celiac disease a bit, as I have already packed a couple of friends off to the doctor with a rash that looked familiar (along with the GI symptoms) and they ended up being diagnosed with celiac disease. Some doctors are very poor at recognising celiac disease and it is important for your long term health to stop eating gluten if you have it.
Although I think they have their work cut out as we get older and collect more illnesses running concurrently, along the way. But that's no excuse to leave people suffering. Being a lady of advancing years doesn't let them off the hook when it comes to caring for your health.
I actually asked the dermatologist whether the rash could be connected in some way to my PMR but she just kept reiterating that my blood test was “clear”!! But I’ll definitely investigate the celiac disease. Thank you for the suggestion.
"Clear" of what? Lab results aren't all-seeing or all-knowing, just one of a set of signposts.
I had what could have been the DH rash - and the one thing is was was ITCHY!! It started with the itch, deep down in the skin, and then. within hours, tiny blisters appeared over the area and then they sloughed off. I ate gluten-free for a long time until I discovered that the Juvela gluten-free bit not wheat-free products caused it and it could be controlled by omitting commercial wheat alone from my diet.
Yes, it’s so frustrating when the doctor says “it’s clear, no further action”😖. I have a feeling I’m going to have to start my own “tests” to find out what exactly is going on.
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PMR- a plain English description
Adrenals 
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