Diagnosed with PMR 2015 November. Only as couple of mini flare type symptoms. Otherwise I tapered very slowly over these years. A couple of times I’ve upped the prednisone for a few days due to an unusual stress.
A blood glucose test last year showed very low sugar 44. Though hypoglycemic my whole life this was a new low. Rheumy said this is adrenal insufficiency; I then was referred to an endocrinologist who could not find any other reason for it. He ordered the emergency solu cortef shot and had me test my blood sugars. These were often low despite good efforts to eat properly. Then my IBS hit and I feel terrible: frequently dizzy and just out of sorts. I have no symptoms at all of PMR. My lowest prednisone dose was 4.25 with 1/4 mgm decrement most of the time. Now I got scared because I can’t live this way. Now I’ll try 5mgm. But for how long??? Today I took an extra 5 because my son’s birthday is tomorrow and I need the energy to make his favorite meal. My morning blood sugars are in the 60s.
Can anyone relate and will I ever be free of prednisone or, at least be, on a lower maintenance lifetime dose?
He ordered a morning cortisol test when I was at 4.5 but we messaged today and he said not to do this test.
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Karenjaninaz
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Hello, I’m trying to understand. Do you pop and extra 5mg on top of the 4-5mg you have already taken, so in effect having around 10mg when you need some energy?Was the morning cortisol cancelled because of that extra 5mg you popped as you said last time? Have you had any sort of conclusive test of adrenal function or is it all on the basis of low blood sugars.
It seems that you are in a no man’s land with no plan (yet) and no concrete diagnosis (yet) and what appears to be possibly self medicating that might be making it impossible for your adrenal glands to even get a foot in the door. I might have misunderstood the last bit. I think you need some clarity before getting too frustrated.
Snazzy, all my rheumatologist said was, at our last visit, “lower is better”. Like most of us he allowed me to manage the dose based on how I felt. The endocrinologist tested pancreatic function and insulin antibodies as well as ACTH. His conclusion was functional hypoglycemia and adrenal insufficiency. He suggested I visit a specialist in New York City because my case is “complex”. My rheumy said it wasn’t necessary as well as my GP. The endocrinologist suggested I might just need steroid maintenance permanently. I tend to believe that because in 2012 I was near death from a small bowel resection. I never really bounced back from that before PMR. I have absolutely no PMR symptoms at all. We decided to not do the morning cortisol while on 5mgm prednisone. It makes no sense .
I never”pop” prednisone go “get energy. That’s crazy and counter productive. I am at a low point now and really unwell. Such low sugars are dangerous. Low sugar is a cardinal symptom of adrenal insufficiency. Sometimes I feel like I’m dying when my blood sugars are low but not hungry. Loss of appetite is also a sign.
I add I have frequent dizziness especially mornings. Ginger normally works for this but it’s not as effective this time.
You are obviously in a difficult situation. My comment about energy was based on your comment that you took an extra 5mg for your son’s birthday to have the energy to do the meal. My thought was that if the dose is put uptoaround 10mg,that is a level when the adrenal function is likely switched off again. If that happens too much what adrenal function there is might not be able to get going and make matters worse in the long run. It seems that it would be nice to have some good guidance about how to manage this. Perhaps you do need to be on 5mg for life and be on an even keel and give up on reducing lower or to know whether it is ok to take higher doses even if it risks turning off what adrenal function you do have.
My answer night have been misunderstood: 1. I have been on exclusively low pred doses the last several months of 4.25-4.75
2. I am not alternating 10mgm with the other doses. The 10 mgm was basically a one time sick dose as recommended by my endocrinologist when I feel ill.
3. The solu cortef shot is in an emergency kit to be administered in case of adrenal crisis. I’ve not needed or used it.
4 When I was administering anesthetics we frequently gave an IV steroid dose to support a patient undergoing the stress of surgery.
The purpose of my post was to hear others experience relating to mine.
I’m due to have a synacthen test next month. I’m at present on 3mg of prednisone. My rheumatologist didn’t want to do the test on a higher dose of prednisone. She said 3mg is for her a normal dose to check the adrenals.
I am having adrenal withdrawal symptoms, which are are something like a weaker pmr pain.
I understand from your post that you had the solu cortef ...that’s why I replied as I did.
Maybe I should seek another opinion but lets face it; some of us will end up with adrenal insufficiency which remains. No matter how creative the taper.
I believe my PMR is in remission so no pains to treat.
Don't confuse the fact that pred is used to manage PMR but can also be the means of managing adrenal insufficiency where the production of cortisol is lower than the body's basic needs - which is what your rheumy seems to be doing. Yes, in the context of PMR, lower is better, but in the context of adrenal insufficiency, while a lower pred dose is required to prod the adrenal glands awake again to do their job, lower may be life-threatening if it gets too low and leads to an adrenal crisis. Getting the balance may be tricky.
Have you seen the endo since the IBS flared up again? One of the things the body does is produce spikes of cortisol in order to allow the body to recover from illness and heal - if your adrenal function is so blunted it is unable to do that, that may well account for the increase in unwellness accompanying the flare in IBS, which is debilitating enough anyway. Did the endo discuss switching from pred to hydrocortisone (the synthetic version of cortisol) taken 2 or 3 times a day to better mimic the normal pattern of cortisol production? Sometimes that better stimulates the complex feedback system that is involved in the process - although low enough pred also works for many. It may not manage PMR symptoms as well although there is at least one person on the forum who uses HC to manage her PMR.
But now it really depends on which you need the pred for most - PMR or adrenal insufficiency. You may have no PMR symptoms because the dose you are on is loads for the PMR - but it is borderline as an adrenal replacement therapy. In terms of PMR you may well be able to dispense with pred altogether - you have to try to find out. But in the meantime, that would put you at risk of an adrenal crisis. If it were me, I'd go with the endo and find someone who "gets" the complexity of the situation because I'm far from sure your rheumy and GP do.
I don't think it is possible to say that you will be able to stop taking some form of corticosteroid or even what sort of dose it may be. As it stands at present, 4.25mg is not enough replacement therapy - that isn't to say that with putting up with feeling this bad for longer or by switching to HC instead you can't get your adrenal function to improve. SheffieldJane had one synacthen test at 5mg that was very low but at 3mg it had recovered to almost normal and certainly very promising. But crystal balls aren't normal furniture in the consulting room.
Thanks. It makes perfect sense. I’ve tried those 4.45-4.75 doses for many months and I started to feel so unwell it was rather scary. I am able to message my rheumy easily through my patient portal and he is very responsive. The endocrinologist discharged me from his care and suggested I see someone in New York City at a large center. He seems only to work with diabetics. He actually warned me not to go below 4 mgm but I never made 4.In the meantime I’ve asked for a referral for an endocrinologist who specializes in adrenal issues.
That all sounds good - diabetology is a bit different so someone who really does adrenal stuff would be much better. I look forward to hearing the continuation of the story
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