For background I should say that I finished with prednisolone at the end of January this year. I’ve had no return of PMR symptoms but have been irritable and tired with my ‘get up and go’ non-existent 😠. I saw my rheumatologist a month ago and she requested a morning cortisol test along with my usual blood tests. The results arrived in the post yesterday- Cortisol 240, CRP 9 (up from 3 two months ago and in my opinion most likely due to back strain caused by extra physical exertion). The cortisol result is disappointing but at least it shows that that my adrenal function is working to some degree. My blood results are consistent at around mid-130s/75. I haven’t had any response from rheumy regarding the cortisol results but early days so will wait a while before I contact the clinic.
Thank you for reading this update.
(I should mention that I’m still taking Leflunomide 10mg daily for Aortitis.)
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Have you had a synacthen test done? That is maybe more interesting now - theoretically your cortisol falls in the normal range, albeit on the low side, but it is whether your adrenal glands can produce more in an emergency that matters.
Hope your CRP settles again - I assume they are keeping an eye on it?
Thank you, PMRpro. Yes, BP (must read back my work before handing in) 🙂.
I haven’t had a synacthen test and was thinking that should be the next step so will look into that after the Bank Holiday.
My CRP level hasn’t been flagged up for many months but I wasn’t surprised by the raised result this time as my lower back had been very painful for around 3 weeks previously. CRP is also kept an eye on by the Leflunomide prescriber who calls me every three months before issuing my prescription. She called a week ago and appeared satisfied with my results which I hadn’t seen at that time.
Have tolerated Leflunomide well in respect of having no apparent constitutional side effects. CT-PET in Dec 2022 showed “abnormal tracer accumulation involving the wall of the aorta as before (March 2020) but reduced, discussed at radiology MDT and uptake correlating with atherosclerosis. No increase in any aortic dilation (from March 2020 when aneurysmal ascending aorta measured 4cm).”
I agree with PMRPro. You don’t know if your adrenals have gone deaf to the shouts from the pituitary or whether the issue is further up stream. Saying that it took me about 18 months from stopping Pred to feel that I was constantly working around the whims of my adrenal axis. If your adrenal glands can’t respond with enthusiasm when blasted with a hormonal megaphone the approach needs to be planned accordingly. Being off Pred is even better as that gets rid of the discussion as to whether whatever dose of Pred is influencing function.
Thank you, Snazzy. Patience is required even after Pred and I will get there eventually. I do appreciate your comments as I do PMRpro’s and DL’s and SJ’s etc,etc. 🥰
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