I was wondering if anybody could help or advise me. I had Polymyalgia from December 2016 to April 2018 and was on steroids (Preds) during that period. The whole episode came with a huge bout of chronic fatigue and I continued to struggle with this on and off after recovering from Polymyalgia. In September 2019 I had some blood tests in France whilst on holiday. The results confirmed that the immune system was struggling and depressed (French description) (immune suppressed) I was to really surprised as I had been off steroids for 17 months and had expected my immune system to have recovered.
Has anybody else experienced this after steroids and what can I do if anything to assist the immune system to recover from the effect of the steroids?
Thanking you for reading this. Looking forward to hearing from you
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Mariemcdo
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The French lab ran a lot of different tests, I think they were mainly looking for possible cancer markers due to the continuing chronic fatigue. I don't have the paperwork as I gave it all to my GP in the UK but the 'immune suppressed' was very clearly written on the results and suggestion for much further testing to be done. They tend to do very in depth testing in France in comparison to my GP at home. When I showed him the results he brushed it aside and said it was to be expected as a direct result of the steroid intake, nothing surprising or alarming. I'm just searching for info on how to improve my immune system, and wondering if others are still struggling like me after coming off steroids? Thank you
He is possibly wrong about it being to be expected if you had been off pred for a while, I would need to do a lot more reading. That's why I wondered what tests they had done.It is possible you have another disorder - but without the results it is difficult to say. It would be interesting to know if they looked at adrenal function.
Thank you for your response. I’m going to contact the GP surgery and ask them to email me the test results so that I can I can have a look at the tests that were done. So hopefully will have more information.
Snazzy has reminded me I meant also to point out that chronic fatigue is a part of almost all autoimmune disorders, and in combination with the muscle pain of PMR might well LOOK like CFS. It isn't CFS as a separate condition though. I think far too many doctors just don't appreciate how debilitating and disabling PMR really can be in itself and look for addtional complications.
For anything up to a year in some cases but sometimes longer. Adrenal function doesn't return overnight - it is a slow process and for some it doesn't return entirely. Below a daily dose of about 3mg the doctors can request a synacthen test - it shows if the adrenal glands are CAPABLE of producing cortisol but not WHETHER they are, it is an extremely complex feedback system involving a range of organs, glands and hormones. Any one bit not functioning well affects the end result.
I suspect the French tests showed it wasn't entirely "right" - but why they mentioned "immune response" isn;t clear. Although poor adrenal function would also affect that.
PMRPro - I’ve been on 1.0mg daily for 3-4months now (generally ok except for severe hand pain - knuckle joints predominately) but not exactly bursting with energy..! What does a Synacthen test involve and what symptoms would I have to relate to my GP in order to ask for one?
Long standing fatigue that isn't improving would be a major sign. Low BP (would contribute to the fatigue), other signs and symptoms of Addison's disease I suppose.
You take your morning pred dose on Day 1 as normal but on Day 2 you take no pred, you can take other medication with water and attend for the test at 9am. A baseline blood sample is taken at 9am and an injection of synthetic ACTH (synacthen) given (they usually use a cannula that remains in for the duration of the test so only one stab!). More blood samples are taken at intervals depending on the local protocol but usually it is just one more after 30mins and another after 2 hours.
jinasc of this forum says it is the best test she's ever had - reclining chair for the duration. She'd taken a book but was wakened after 2 hours by the nurse and given her book and specs back
I agree with PMRPro that looking at adrenal function would have been very useful; poor adrenal function can feel very like chronic fatigue syndrome. The immune system has many parts to it so the term immune suppressed can cover all manner of things; you need to find out the specifics.
I can't comment on the immune system bit of your enquiry as I have had no reason to have it tested though I have only had one head cold since stopping steroids more than six years ago so it can' be too bad.
What I can say is that getting back to normal energy and stamina levels was a very slow business. At least 18 month to two years. I am a keen gardener and it is only this season that I have been able to work outside with bare arms. My skin had remained super fragile for at least five years.
Patience and an awareness of individual differences are crucial I have found.
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