After my run in with the GP surgery I have finally had my basal cortisol test. 461. So I’m assuming that it’s fine and that they are working. Will they be working normally or is it showing that they are capable of working.?
The doctor at the surgery asked me if I wanted to be referred to the hospital for the specialist to interpret the results. As she was not sure!!!!! I replied no as long as there above 450 I’m happy. What is happening!!! Why doesn’t she know.
I am feeling happier now and hope the end is in site. But slowly slowly does it.
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That’s good news. However, do be careful and don’t reduce too fast and take on too much activity without recharging. I found that I’d could be fine but if stressed or challenged all day or in one acute event then I suddenly wasn’t, perhaps because my adrenal function was not consistent. Even when at 1.5mg Pred my results were very reasonable, the Endocrinologist wasn’t happy to discharge me and was very interested in my symptoms and energy levels. Once I was reporting being consistently without energy crashes after a challenge they were happy to discharge me. Don’t forget you’re still being propped up by Pred so you still have to gradually wean your body off it.
Thank you. Yes I agree. I do get a lot of times when my energy levels just drop and I have to sit and rest. I’m reducing very very slowly and hope the end is near.
I don’t want to rain on the parade but keep an open mind because end of Pred doesn’t necessarily mean end of all this. It took a year of not feeling myself after stopping Pred in Aug 2020. I think DL has said the same. My muscles suddenly became less feeble and prone to injury this year for no apparent reason, some 18 months later. Bear in mind though I started on 60mg and got long covid from March 2020 though got to zero during that. Just saying that zero Pred doesn’t mean you will be out the traps like a greyhound.
That result is normal - shows they are working fairly well day to day. It won't show how reliably they are working if you have stress to deal with but that is said to take up to a year to settle down after coming off pred altogether anyway and you have a bit to go. You said you feel worn out by the end of the day so they probably aren't by any means 100% yet.though. You have been there before haven't you?
And remember - your adrenal function may be getting there - no guarantees the PMR is totally gone
Why doesn't she know? Not her specialist field and won't be looking at much besides basis endocrinology as a GP - diabetes and anything else suggestive of problems will be referred. Plus some are lazy ...
Thank you for your reply. I do get exhausted but on reflection it seems to be when I do do too much. I did get off pred for about three weeks when I started with the stiffness and pain and difficulty in setting off to walk. I will not do that this time. I’m not sure what is PMR pain and the ohhh so joyous pain of old age. So will be taking it so much slower this time. My GCA doesn’t seem to bother me other than a little worry in case it hasn’t gone.
Thank you. Good to know. I won’t be rushing to get off my pred. Would it be wrong if I could get down to 1mg and stay there for a long time or should it be 0.5 mgs.
Anyone who gets to 1mg and decides to stick is really rather sensible I think! Prof Dasgupta told us a couple of years ago that he often keeps patients at 2-3mg longer term as it reduces the risk of relapses. I think many patients could get lower - but if it is good enough for him ...
At such low doses it up to you, there really in no rush…I know SnazzyD took quite a long time to get from 1mg to zero.
I took about 20 weeks…1mg to 0.5mg was relatively easy, but did stutter a couple of time with 0.5mg to zero - was away on holiday for part of it, but think some was mental dithering as well…..but I thought so long as you get there in the end, it doesn’t matter….and it’s certainly not wrong.
Good morning. I recently posted about my rather strange conversation with my GP that once you get to less than 5mgs the adrenal glands will provide all the cortisol you require to stem the symptoms of PMR.I have arranged to speak with him again on Monday to make absolutely sure I understood him correctly because this is a rather bizarre theory.
Like you I have been gradually reducing to 3mgs and find that any small drop will gradually result in mild symptoms so I just pause and try again in a few weeks.
I started pred in June 2020 and have been on 5mgs or less for 6 months.
My plan is to ask my GP for a cortisol test as there is no way he can know whether my adrenals are working and even if they were I have been reassured by P.MR pro that Cortisol is not as powerful an anti-inflammatory as prednisolone .
Your experience proves that even with functioning adrenals a dose of even 1.5 maintains symptom control.
Well I am rather nervous about my conversation with him on Monday but I feel strongly that I have to go down the route of questioning his logic .The bottom line is I am continuing on my plan to reduce slowly and I must tread carefully as do not want to alienate him or make him feel undermined .
What concerns me the most is how many medical personal are misinformed and why.
Partly it is because of so called guidelines which are ,to some, set in tablets of stone.
To some extent it is perhaps because they are not accustomed to patients challenging their opinion.
His lack of knowledge covers two areas: pharmacology where above 7.5mg pred the production of endogenous corticosteroid is suppressed and doesn;t return immediately but slowly and rheumatology where endogenous cortisol does NOT suppress PMR symptoms. If it did, we'd never develop PMR in the first place since you would be ill for another reason if your adrenal glands weren't producing it!
Hi Thank you for the post as it is informative to helps me too. I was diagnosed with PMR and GCA 6 years ago and only now been able to reduce to 8mg and been using DSNS reduction going down 1mg at a time. I took 7.5mg this morning before I read this post and wondered if I should also request a cortisol test before going any further and it is right to reduce by 0.5 at a time now.
I hope someone with more information than I can give will come along and advise you. But I think maybe your dose us a bit high at the moment. I have reduced every 4-6 weeks by 0.5 mgs. Long and laborious but hoping it’s the right way to go.
Most endocrinologists are reluctant to do any testing until the patient is down to at least under 5mg and preferably 3mg. Above that the dose of pred almost certainly suppresses any production of cortisol by the body so it will be low. Some people have low results ar 3mg but are improving markedly by 1.5mg. Others are pretty much back to normal by 3mg.
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