I haven't posted anything since last May when I was on holiday in Italy and had gone up to 20mg of prednisolone to help me enjoy my holiday. I had been diagnosed with PMR by my doctor the previous May so I had been on the steroids for a year. I saw a rheumatologist a few months after my diagnosis and he thought I didn't have PMR at all! However my GP disagreed. When I returned home after my holiday I started to reduce the prednisolone but again I felt exhausted and moody all the time. I decided to consult with a different rheumatologist and once again she said that I don't actually have PMR. To say I am upset is an understatement as I am now down to 7mg and I feel constantly fatigued and quite depressed. I feel I have been on this horrible medication for no reason and I'm finding it difficult to get off it. I am reducing by 1mg each month. Is this fatigue down to the reduction? I would appreciate any advice or opinions. Thanks for listening! 🤗
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Suin555
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If it’s not PMR then has anyone said what they think caused the initial problems/symptoms?
As you are at 7mg, that’s about, or just below the same level of cortisol that your own body would be producing naturally, but hasn’t been because you’ve been on a higher of Pred. Now your own adrenal glands need to start working again to maintain the “natural” level, and sometimes that takes a lot longer than we anticipate. Side effects being fatigue and sometimes depression.
The only way forward really is a slow reduction until the adrenal kick in.
Hi again, thanks so much for your reply. I haven't had any other suggestions as to what it might be but I had a very bad flu type virus just about a month before my diagnosis. I just want off these steroids and it's so annoying to know that I just can't stop taking them and probably should never have been on them! I think doctors are inclined to prescribe them too often and much too quickly!
Maybe, but some on here, me included would say sometimes they are too slow! 18 months undiagnosed in excruciating pain and loss of sight in right eye before prescribed.
Perhaps more investigation should have been made by GP and/or Rheumies, or just a short dose to see results. But it is what it is, and you are in the steroid merry-go-round now, so the slower you come off them the better - the level you are at gives minimal side effects if any, and your adrenals need time to start working again. Try and reduce too fast, and you will feel even worse I'll warrant.
"I was on holiday in Italy and had gone up to 20mg of prednisolone to help me enjoy my holiday" - obviously being on pred made your symptoms much better. Not that most people would choose to go back to 20mg just to enjoy a holiday unless they needed it to manage symptoms.
Both rheumatologists said I didn't have the classic symptoms like the stiffness etc.. I just had a few muscular pains in my shoulders and thighs. I had a very bad flu-like virus just before the diagnosis so that may be related! I'm quite confused actually. My doctor suggested going up to 20mg as I was very fatigued and he thought that might boost my energy! To be honest I have lost all faith in him. Two rheumatologists cant be wrong! 🤓
No? Two rheumatologists, a couple of years apart, failed to diagnose textbook PMR for me, one insisting it was OA, of which there is no sign whatsoever 13 years later and the other wanting it to be an inflammatory arthritis - again, nothing to be seen. I have spoken to rheumies who have some very strange ideas about the "classic" symptoms. It isn't easy and GPs probably do over-diagnose PMR - but you would possibly have waited months to see a rheumy in the first place and if it had been PMR without pred it would have been fairly excruciating. Been there, got the t-shirt!
However - hopefully this is the end - a slow reduction from 7mg should get your adrenal function back without too many side effects from the pred. One top rheumy likes to keep patients at 5mg for a few months which is what allows adrenal function to catch up and settle down and the rest of the reduction seems easier. You haven't been on pred very long really so you should have a better journey than some of us on pred for years look forward to!
Hi mamici, thanks for you reply and no they haven't suggested what else it could be. I did however have a flu type virus about a month before I saw my doctor so perhaps it's viral related. I still have a few pains but nothing major! It's very frustrating being wrongly diagnosed and having to take steroids which are wiping me out to be Honest!
There is some thought there may be a form of PMR (or perhaps a better label would be pred-responsive polymyalgia since PMR isn't the disease) that is similar to reactive arthritis in that it appears after an infection but resolves after some months. The presentation may be identical - and, after all, your rheumies didn't see you originally. They might have said the same thing at the time.
Ah buongiorno PMRpro, thanks so much for that. Actually that might be an explanation. My rheumy wants to see me when I have further reduced the preds so I will see what he thinks but that prob wont be for a few months. In the meantime I'll stick on 7mg for a while, take some supplements & fingers crossed!!👍Off to Tuscany in 5 weeks time so I really want to be up for that so I need to find more energy from somewhere!! 🤗Ciao.
I can understand your disillusionment. I suppose the question is, did you have pain that was helped by Pred? If you did, your GP may have been right. Having read lots of posts over the last 18 months, it does seem that there are Rheumatologists who are practicing outside their competence in the area of listening to patients and joining up the dots, but some who are outstanding. I would really want to hear either doctor’s reasoning. To a great extent they are guessing because of the problems with diagnosing PMR/GCA.
I found 7-5mg hard going with 7mg being the worst. 7 is too low too be enough for the body’s cortisol needs but too high to trigger the adrenals to take up the slack. I was an emotional wreck, felt so tired and ill. So, it may be you did/do have PMR and you feel awful at this neither here nor there stage. It feels like you’re addicted but it will pass. I find that 0.5mg per month is easier because it is a smaller overall percentage of the dose.
Suin, I can sympathize with the fatigue and mood issues. I experience them as well but have decided these issues are related to my adrenals. I've been on prednisone for over 4 years, starting at 40 mg. I'm presently at 9 mg and have been dropping by only .5 mg every 4 to 6 weeks since reaching 17.5 mg to avoid flares. There is some indication that I may only be absorbing 50% of the prednisone.
I haven't had any of my typical PMR pain or flares for a several months. However, in the first few weeks of a drop I experience an entirely different set of symptoms including fatigue (often totally debilitating), dark moods, and I no patience. These can be symptoms of secondary adrenal fatigue. As I reach the full drop these symptoms improve and disappear after a week or two at the new lower dose.
As for your experience with the so called specialists, I gather from other related posts and my own experience very few rheumatologists are worth a pinch of salt when it comes to PMR. A few of the forum contributors have found great ones, but they are few and far between. I saw one for the first time in May of this year and don't even want to tell you about the experience it was that bad!
I'm seeing an endocrinologist in October to discuss the issues of prednisone absorption, 'normal' physiological cortisol level, and secondary adrenal insufficiency. Normal cortisol is often cited to be 7.5, but it can vary and I suspect that my 'normal' may be higher given my need to reduce prednisone at such a slow rate to remain functional. I'm hoping this specialist will be worth more than a pinch of salt, but still prepared for disappointment.
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9 years and counting with PMR!
First visit to Consultant Rheumatologist and not good news
Any thoughts very welcome.
Newly diagnosed with Polymyalgia Rheumatica and more recently GCA
Other people's experiences recntly diagnosed with PMR.
