Posted , 11 users are following.
Diagnosed with GCA last July. have reduced from 60mg pred to 3mg daily. I have not been diagnosed with PMR. Rheumatology and GP say it could be age related. I don't think this extreme tiredness is age. I can't walk very far and totally demoted to do anything . Are my adrenal glands working working yet? Help!
1 like, 7 replies
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celia14153 val26097
Posted
Others will come along but you seem to have reduced very rapidly, which is against the experience here of tapering slowly to give your body a chance to deal with the symptoms and adjust to lower doses. You don't mention where you are feeling pain. Polymyalgia is by and large symmetrical with pain in the shoulders down to the elbow, neck and groin. These can vary but the pain is debilitating and I found much worse than the general achiness of age. Have you tried upping your dosage to see if it brings relief? If it were me I'd try 10mgs for a few days to see if it helped - a good test. Again other people are better informed than I am but I think your adrenals should be ok.
val26097 celia14153
Posted
Thanks Celia. Rheumatology told me when and how to reduce prednisalone. I am too new to this for me to self medicate.😊I have stiffness in both shoulders and neck, pain in hips. Very swollen ankles(realise this is most probably different) breathlessness. It's the exhaustion and weakness i find debilitating.
ptolemy val26097
Posted
From what you say, you may have PMR too, it tends to be bilateral pain in shoulders and / or hips. When are you next seeing your doctor? I got very swollen legs and ankles from the pred.
val26097 ptolemy
Posted
Thanks, you are first to say abt swollen ankles. I m a seeing my GP after a spirometry test results ym breathlessness
ptolemy val26097
Posted
Good luck with your test. I had a blood test to check for heart failure because of my swollen ankles, but it was negative.
lodgerUK_NE val26097
Posted
I also had GCA without the PMR which is quite rare I may add,
I am astounded that within less than a year you are down so low.
http://www.pmr-gca-northeast.org.uk/ when you get onto that site, got to Useful Medical Information and read up on the BSR Guidelines to the Diagnosis and Treatment of GCA.
EileenH val26097
Posted
To get from 40 to 3mg in a year or less is very fast and you have been very lucky. However, although 40mg is the bottom end of the range for managing GCA it is enough and you have been on it long enough for your adrenal function to be affected and it is felt to take up to a year to return to normal even after stopping pred altogether. You can reduce as fast as you like - providing the symptoms don't return.
In some people PMR symptoms can be a symptom of GCA - and it is perfectly possible that now you are down to such a low dose it is no longer enough to manage a PMR type inflammation. So it could be a flare of the PMR side. But the extreme fatigue makes me think you have been reducing faster than your adrenal function can keep up.
Since you are at 3mg that is an ideal dose for you to be given a synacthen stimulation test to see if your adrenal glands are capable of producing cortisol and you should push for that. Recent work has found that far more patients on pred will have problems getting adrenal function back to normal than has been thought in the past. Having a synacthen test should be standard practice for anyone showing such symptoms - and if your current doctors won't listen, find one who will. Referral to an endocrinologist would be ideal because they will have more experience in assessing whether you will be able to continue reducing the pred or whether you need to slow down - and whether you need to know what to do if you are taken ill or have other stresses that wouldn't be easy to deal with with low adrenal function.