Good day, forum, and thank you for all the good advice over the years. I have had PMR since 2019, and have been able to manage the symptoms with prednisone effectively. Once again, I am at a low dose in my slow tapering plan (currently 0.5 mg/day). Apart from my CRP being a little high (7 mg/L, trending downwards over recent tests), I have no clear symptoms of PMR.
I live in Canada, and see my rheumatologist tomorrow,. I was wondering within other health care systems, are there routine tests or procedures that are done to indicate that PMR is in remission (if that is a correct term) and that normal adrenal functions have resumed and are adequate? I would like to ask my rheumatologist if they might be helpful in my case.
Thanks very much for your time.
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Marinescience
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There is no test as such for PMR…just being off the Pred for a few months [or longer] and no return of symptoms.
As for adrenals… there is a Synacthen test that shows they are capable of working, but not how well… and it can take up to a year [after you have finished Pred] for them to be back up to functioning at 100%.
So considering your replay and SnazzyD below, it seems that in my case where I feel well, there is little or no point in doing the cortisol tests. Thanks very much for your help.
Not really unless you feel symptoms of adrenal insufficiency - although there was one member who didn’t have any symptoms but did have a/I when she was tested… but it’s unusual not too low.
This link does list symptoms -just so you are aware
Do you feel ok? If you have reasonable energy that doesn’t crash such that you feel like a void, it’s likely they are working ok on a normal daily basis at the moment. If you suddenly took away the 0.5mg, they might need some time to make up for that with their own cortisone. If they are not working routinely you really feel it, there’s no guesswork needed.
There are two routine tests done for adrenal function. One is the early morning spot check for cortisol level. The other, the Synacthen test that shows performance of the adrenals when given a drug that simulates the hormone signal to work from the pituitary gland. One tells you they are working on the day and the other that given a hormone kick they will respond. What they don’t tell you is if you have an urgent need for cortisol due to shock, upset or illness, they will rise to the challenge reliably. This is why you need to carry Pred with you when out and about just in case and ideally a medic alert, now and for a year after stopping.
Personally, I found it took about 2 years and my adrenal crises came out of the blue after sustained extreme effort, emotion or pain. My adrenal tests on the day were good when I had them so there was no reason to believe there was an issue.
Thank you, that's very helpful. I was wondering how long after one stops prednisone could the disease re-appear. The advice to carry prednisone seems particularly important, as I still travel internationally on occasion.
If it is because the current episode is still grumbling away under its breath, then it can take up to 6 months for symptoms to appear, There is some thought that the disease activity waxes and wanes over time and sometimes you may be able to reduce the dose on a downward phase only to discover a month or two later it is waking up again. Even 1/2mg pred can be enough to scoop out enough inflammation each day to stop the bucket being filled by the dripping tap of inflammation and even Prof Dasgupta has admitted he keeps some patients on a low dose long term as it reduces the incidence of relapse.
However, once your immune system has gone haywire, that propensity remains for life and PMR can reoccur after years, even having totally gone into remission in terms of producing symptoms. Some people never actually get off pred - possibly because they are never in a period of quiescence long enough to taper because of adrenal considerations. It isn't necessarily the PMR keeping them on pred, adrenals have a massive role to play as well.
Very interesting to me your last paragraph! I’ve been off pred for thirteen months, yet had quite an issue earlier this week, when I left my breakfast unfinished as I felt really bad nausea. Didn’t vomit, but had to sit down all morning as I felt rubbish. Very reminiscent of being on the lower doses of pred.
It was my first such episode for three months, and I had hoped to be over that by now, as it was over the first year on zero. I live and learn!
I had sinacthen test 4 weeks ago, got letter this week which said my adrenal gland is asleep because the reading was 400, it said it must be 450 after 30 mins. I w as pleased because it’s going in the right direction! Has been very low in the past. I was on 4.5mg at the time feeling very ill. Have gone back to 5 mg but will try at some point to very slowly drop.
At 4mg I wasn’t feeling great by any means and my Synacthen was ok but not very special. It was how I felt. Months of feeling like it would never end started to contain good days. By 1.5mg I was feeling much much better but still had to pick and choose my activities. My approach was not waiting until I felt good like for PMR reduction, but continuing painfully slowly whilst treading the thin line between collapse and keeping my head above water. This meant really cutting back on my daily activities at some points.
Sadly not much! Vacuum one room instead of 4, one short trip to a local village shop and that was all. No gardening 😩, gentle walk with the dogs daily.
Yes, it’s Fibromyalgia, which I think is when no inflammation shows that’s the conclusion. I do have different awful pain, sensitivity to noise, smell, heat, you name it! Fatigue, just wish I could take the medication to get some ease! Horrible. Just glad one battle is getting to an end (adrenals)
No, Pred didn’t; I just had a good run, I suspect because my body wasn’t having to cope with raging inflammation. I find stress that leads to disturbed sleep is the worst. The bodily distress from low adrenal function without the presence of Pred was another stressor. The biggest cause for me has been emotion and working through that from the past particularly, had the biggest effect of all.
Yes, I understand what you are saying. Our bodies over react to stress especially emotional. My sleep is dreadful, but we need it! I envy people like my son and sister who can sleep on a linen line!!
No test for PMR, unless you count getting off pred for 6 months without a return of symptoms - and it happens even after 6 months if the disease activity is really low. It can take a while for the inflammation to build up enough to cause symptoms and even 1/2mg can be enough to stop that build up.
Adrenals - how do you feel? How do you cope with stressful events? If you aren't fatigued and cope well, you are probably OK.
You could ask the GP to do a basal cortisol blood test, on a sample taken between 9am and 1pm. A result there that is above 450 nmol/l is taken to be normal. below 100 is showing adrenal insufficiency. In between is equivocal and may also be normal, especially in older patients, but a synacthen test is needed to differentiate.
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