Hi, for the last 2 and a bit weeks I have felt utterly exhausted all the time. I am normally very active- walking, cycling- but just have crippling fatigue……..no pain or feeling “ polymyalgic “ in the slightest.
I had blood test taken last Wednesday, CRP 136 so GP wanted to see me first thing the following morning. I was dreading the diagnosis of adrenal problems but he thinks I have a virus as all other tests are normal including cortisol. I must add he is an excellent GP and I have a lot of respect for him.
He said not to increase Pred- I am at 2.75 mg after 3 1/2 years. I’m still exhausted, headachy and I don’t understand what is going on. Having more bloods done on Thursday. What would be your advice please?
Many thanks as always. 🤞🤞
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Bubble56
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What sort of cortisol test did he do? You can have a level of cortisol that is in normal range but not be high enough to deal with doing more than basic living - when you do more activity or have a virus the body would usually produce more cortisol to deal with it. So he could right on all counts - normal basal cortisol but the virus is wiping you out. All you can do really is rest, rest, rest and try to recover. CRP is a very non-specific test and shoots up if you have a chest infection, doesn't have to be PMR.
Oh my goodness you ladies are so “ on the ball”😁! Thank you for your speedy responses. It was an early morning basal cortisol level as far as I know but I can ask more questions on Thursday. You have put my mind at rest a bit and physically I have no choice but rest. I don’t know if I have just replied to you PMR pro but I really appreciate DorsetLady’s and SnazzyD ‘s responses too. Thank you all- you really do a fantastic, extremely supportive job. ❤️
Just because you had a normal level of cortisol at the point of the blood sample doesn’t mean the adrenal glands will keep paying out all the time, especially when you are doing extra or the higher demand is sustained. I know that from experience. I had a viral illness earlier in the year and I feel like I’m back to square one with energy and muscle fatigue but all tests are hunky dorey. As has been suggested it’s probably a combination of things.
I don’t want to alarm but my primary symptoms of GCA were but kicking fatigue and high inflammatory markers with intermittent mild headaches. I never had jaw, scalp, vision etc issues. I did have a dry cough and hoarseness. We decided probably because I had more LVV vs GCA. I hope they plan to recheck your markers and if you develop any other symptoms please treat them seriously.
Hi Everyone. This could be a mirror of the post I was just thinking of sending. GCA sice Aug 21. Saw GP...could be viral, or withdrawal or mini flare fatigue. So...having reached 4mg, she suggested going back to 4.5/5mg which would help adrenals with the virus if it is that, and enable a slower taper, despite what rheumy might think. Already on DSNS, so might stretch to the 7 week method after a while. How long should I stay on the raised dose Please? Thank you for all the advice.
Not really sure 1mg will achieve a lot if adrenals are struggling with the virus. But you could take it up to 7-10 days and drop back to 4mg. But if that is too low, it will still be too low and you risk a flare again.
Ah yes ,I see. 10 days at 5 or even 6 sounds like a good plan, then back to 4 and stay there for a few weeks before trying a further taper. Thanks for your help...rheumy often says to just tough it out, but I don't agree. Quality of life whilst being treated is also very important.
If the dose is even slightly too low to manage each daily burst of inflation in the early morning, then it will build up in the same way as the famours dripping tap will fill a bucket sooner or later. And when it gets to a certain level - it manifests as symptoms and unless you take enough pred it will continue overflowing.
You CAN'T tough it out - and all that happens is you have a flare and they will either panic and up the dose far further than is really necessary or leave you in pain.
Thank you both of you....it's the never ending problem with the question of is it a flare, or is it withdrawal of pred or both. I only have GCA....and no visual disturbances, but lots of other things like being in the middle of menopause again with hot flushes! I will definitely increase for 7-10 days...which will hopefully enable me to sing with my choir at the weekend ... in gaelic...resting up in preparation. Thanks again.
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