Hello all. Can adrenal tests be done while on Prednisone? I have heard different answers in the past including one Endocrinologist I saw about a year ago regarding extreme fatigue and who would not test me until I was off Prednisone. I was on a relatively low dose of Prednisone at the time. Wondering if I should still pursue this again to help isolate if reemerging fatigue and new types of pains while tapering are coming from steroid withdrawal or PMR flare.
has anyone gotten beneficial help from an Endocrinologist to help get off Prednisone?
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Italybound62
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You can be tested while still on a low dose of pred - most endocrinologists require the patient to have least got down to 5mg, preferably 3mg. The result may be artificially low but some people get very good results and it does provide an indication of whether any recovery is taking place. Some endos actually specialise in interpreting the results when the patient is still on pred,
Most endos would want to switch a patient to hydrocortisone - but for us there is the complication that we are on the pred to manage the PMR/GCA inflammation and hydrocortisone is very poor at that. The only way to encourage return of adrenal function is to persist with a lowering dose of pred - but that must be balanced by the requirements of the PMR/GCA. If they are still active - you need pred.
If it is a PMR flare then the symptoms will be likely to increase - if it is due to just lack of pred they should be stable or improve. But it is a juggling act.
Should have explained - hydrocortisone is preferable to pred for getting adrenals to wake up as it is in the body for a relatively short time so the low levels are there more to stimulate the body to make cortisol. It can also be given 3x daily to better mimic how the body produces cortisol. If you have established adrenal insufficiency and they think it is unlikely that function will return, then pred can also be used with the convenience of 1x daily dosing. And for us, pred will manage PMR symptoms and do double duty - HC doesn't do anything like as good a job.
Ahhhh. so you are saying to take both Pred and Hydro? This Endo I saw wanted me to switch all the way over to hydro only and like I said I didn’t trust it.
No not at all - pred alone can be used for managing adrenal insufficiency AND PMR. HC will manage the adrenal insufficiency and encourage the adrenal function better than being on pred but won't deal with the PMR. So you would use HC if the PMR was fully in remission but if the PMR is still active, you need to stick with pred, The Endo is only thinking of the adrenal side of things - not the PMR side.
There was one doc who put someone on both pred and HC as HC would "stimulate" the adrenals more. Don't think they realised they are both corticosteroids and couldn't understand the effect. Sometimes I have to wonder ...
My Endocrinologist is waiting for me to get down to 4 mgs so that he can arrange another Synacthen test to see if my Adrenals are capable of functioning without added artificial cortisol such as Prednisolone or hydrocortisone. I am finding this difficult because of pains in my shoulders and legs. I have been in this situation before 4 years ago when my diagnosis was just PMR, I now have Large Vessel Vasculitis and GCA. I had a test when I was on 5 mgs and it showed that my function was poor. When I subsequently got down to 3 mgs a further test came back with normal numbers. Both times I was tested I went without Pred for 24 hours otherwise the test would be inaccurate. If I fail the capability test of function I imagine the outcome will be low dose Pred for life. A bit like the Levothyroxine I already take. The main difficulty I found before was hydrocortisone was ineffective in helping the pains of GCA/LVV/PMR which I still experience. It is a different specialism to Rheumatology with different objectives which may cause different objectives in Endocrinology. However, we cannot live without cortisol so it must be treated.So I would see an Endocrinologist and tell you Rheumatologist and aim for them to work with you in partnership. I was also given an emergency hydrocortisone one injection kit that would be needed if I went into an Adrenal crisis. More Prednisolone does not help the fatigue at all. It is caused by the autoimmune disease and long term steroid use. I take naps after lunch and pace my activities at present.
yes I had a cortisol and synacthen test then saw endocrinologist. I was still on 13 msg prednisone. He gave me a plan to reduce and told me to come back when I get to 5 mgs
I was on 3mg and suffering fatigue. Rheumie referred to Endocrinology for a Syncathen test. No steroids for 24 hours before, results ok but not great, in adrenally insufficient range. Due to reduce to 2.5mg, very slow taper then stay at 2.5mg for 3 months. Rheumi & Endo working together. Will meet Endo nursing team to discuss tapering safely.
New complication emerged, Afib not controlled so undergoing cardiac tests for that which I think is linked to the fatigue. So complicated with multiple ailments to unpick what is causing what. In my case I think the heart fatigue has been bumbling away for a long time and I’ve put everything down to GCA/steroids. Well, I’m on that case now until something else turns up!
I found that higher doses of pred helped manage my atrial fibrillation better than just the antiarrythmia medication alone. Adrenal insufficiency can cause/worsen arrythmias too. It was part of the reason for needing 12-15mg for so long because every time I flared the a/fib got worse.
It also went nuts after the bivalent Covid jab and the bisphosphonate infusion in February this year caused atrial tachycardia for a few months. Not a/fib as that was cured by an ablation in January!
I spoke to my Endocrinologist today as it happens, and he was of the opinion that if tapering through the adrenal fatigue stage was too difficult I should be prepared to return to 5mg and stay there for the foreseeable future. This morning for the first time I tried 3.5mg, and he recommended a very slow taper (good man I hear DL saying!)
I have begun to think that my PMR is in remission, as I don’t suffer with too much classic PMR pain any more (but it has been seven years since diagnosis). It is possible that any PMR pain is masked by the acute pain in my right buttock, now diagnosed on x ray as a cam impingement of my hip joint and not the sciatica I have been trying to resolve since January.
Paracetamol has been very effective at keeping the hip pain at bay. But the adrenal fatigue is really kicking in now and really feels like the last straw after the years of managing the PMR. The years of pred have resulted in œsophagites and the lansoprazole has also done its fair share of damage, with various vitamin and mineral deficiencies to be investigated.
The Endocrinologist proposes a short synacthen test, further blood tests, and possibly hydrocortisone as an alternative to pred. This whole year has been one investigation after the other, all starting with an MRI for my sore throat which revealed an enlarged pituitary gland, thereby connecting me to Endocrinology which I doubt very much would have been offered in the normal course of events.
So the answer to your question is Yes, but as we all know all the medics have different ideas about the correct treatment over the duration of PMR. Hope this resolves for you, Chrissie
Yes I will. I recently had two 9am blood tests in connection with my pituitary adenoma and the cortisol levels were reasonable so I’m hoping to find my adrenal glands are prepared to work, unlike my pituitary gland which is misbehaving.
I always find things I wasn’t expecting when x rays or scans are done, although I was beginning to think I had more than just sciatica in my right buttock after six months of stretching exercises.
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