Adrenaline gland function

You'd know by now if they weren't working - you would be so tired you would think PMR was a doddle! And there are other symptoms.

One indication might be continuing fatigue which never improves once at a level below about 7 mg pred.

Ah ok I think I am ok. I am more active and less nap during the day. Do hope everyone online are well 

I was completely wiped for a few days or maybe even a couple of weeks when I got to 7, but since then much better, although I do tire more quickly than I used to in the days before pred.  I often notice a bit of tiredness when I start a taper, like the little bit of increased discomfort, but, again, that diminishes as the taper continues, so I assume all is well, just a little slow....

I had what they call a 'short synacthen test' it's to check the adrenaline gland function, mine are not functioning! But I'm hoping it's because I'm still on 7mg and the glands haven't woke up yet!! Otherwise Ive become Addisonic!!!! 

I am on prednisolone 12.5mg now and I do feel a bit different. My left leg gone a bit funny just like the first time I had the pred when I sat down. Feels like is there and not there. But I can still walk a long distance and go on body trainer for a bit. I walked 9,549 steps today. I got the tracking on the phone,interesting isn't it? I definately walked more than before I was diagnosed PMR. Three months of pain and scared of not been able to get back to normal put me on the walking exercise. It's really worth it. 

ive been feeling exhausted for sometime now and it seems to be getting worse the lower I get , I'm currently reducing slowly down to 5 1/2 , I don't seem able to walk far at all without feeling tired and sore, yesterday I felt as if my skin felt really tender but there is nothing there, I do feel quite low as I feel as if I'm not getting anywhere at the minute .

I've been at 5 mg, and have taken 4.5 a couple of times lately.  I can do things, like walk for up to an hour, or vacuum, or do other fairly demanding tasks.  But If I do too many things in one day I find I absolutely must rest, and often fall asleep almost as soon as I stop moving!  But I also feel that it's getting better, certainly better than when at 7 and starting to taper to 6.5.

I really think you should discuss your reduction plan with your doctor because either your adrenal glands aren't starting to kick in or the dose is slightly too low and you are very slowly building a flare - those symptoms are often typical of an early flare. 

Remember you aren't necessarily reducing relentlessly to zero - you are looking for the lowest dose that manages your symptoms as well as the starting dose did to use until the pMR goes into remission. That might be 6mg for you - and that is still a low dose, less than your body makes itself naturally so side effects are minimal.

The underlying cause of the symptoms we call PMR is probably still active - a problem that means your immune system doesn't recognise your body as self and so attacks it as "foreign". It is that that is the real cause of the fatigue and some other symptoms and the pred doesn't do anything for that. It just manages the inflammation the autoimmune disorder causes to reduce some symptoms and allow a better quality of life in the meantime.

I had a terrible night last night tossing and turning and sweats are really bad at the minute , I've woke up this morning aching in my arms , shoulders and hips I'm due to take 5 1/2 for two days today but really wonder if I should be upping the dose, I'm not due to see the rheumatologist until June he has pretty much left me to manage my dose myself , he wants me to drop 1mg a month but I'm doing it by a half because of the info on here . I feel really poorly today .

It sounds as if you have dropped a step too far and the dose isn't enough to manage the inflammation - all I said in the post above applies. You are on the edge of a flare.

There are rheumatologists who think you can just keep reducing - but that only works if the autoimmune part is in remission. In the meantime - you need enough to do the job.

If it were me in the same position I'd go back to 6mg and stick there. It is a low dose and most doctors don't worry once you are down to that. And frankly - all they can offer is pred to manage the disease symptoms to allow a decent quality of life. So you need a dose that is high enough and it sounds as if under 6mg isn't at present. It doesn't mean you won't get lower - just not yet.

I don't know if I am doing the right thing, I cut out bread and yeast products. One cooked beetroot per day, celery stick with avocado and tuna mash with meal. I still eat pasta or quinoa or lentil cooked with any veg you like for lunch and rice and fish for dinner. No cake and no biscuits sound boring. Sugar is not good for us but I still have a bit once or twice a week. Body is asking for it. But I think beetroot is giving quite a bit of sugar but they are anti inflammatory. So I only stays with whatever it says anti inflammatory yummy and I go for it 😋😋

if you like to search PMR-GCA NE there is a list of food to go for and avoid. Hope that help you and those who read this mail. 

Take care

If you are so sure your adrenal glands are "shot and do not function" then you need to be tested to confirm it.

TTAT (tired all the time) syndrome can be due to many things but if it is adrenal dysfunction it can be identified and treated. Conventional medicine DOES have an answer - it is replacement therapy in the form of a daily dose of corticosteroid. Just like thyroxine for poor thyroid function.

If your adrenal glands are not producing cortisol and you are on such a low dose of pred then you are at risk of having an adrenal crisis. If your doctor KNOWS your adrenal glands are not working but has allowed you to reduce to such a low dose that is medical negligence and he should be challenged on the fact. 

If on the other hand you have NOT been properly tested for adrenal function you should go to your doctor and request it. If he won't, then ask to be referred to an endocrinologist.

The test is known as the synacthen or ACTH stimulation test.

Hi Eileen, I had the synacthen test last week which showed my adrenaline glands aren't functioning. However I'm still on 7mg of prednisolone, with your vast knowledge of PMR, do you think the dose is a tad too high for the glands to wake up? Many thanks Andrea x

That isn't the point of the synacthen test - done and interpreted properly it indicates whether they are still CAPABLE of responding and producing more cortisol.

They don't just produce a steady small amount - in an emergency situation they immediately produce large amounts of cortisol to order. The synacthen test is a stimulation to see if they can do that at all - the fact you are on a dose that is about the same as they'd normally produce is irrelevant., it's whether they can make any extra. At the moment, you are on a dose that mimics what would happen normally so you are generally OK - but if you were to have an accident, severe shock, infection, your body might not be able to produce the extra needed and you could be unwell as a result. That is the whole point of the blue steroid card we should carry - to tell healthcare professionals that our body may not respond like other people's in the same situation and they can watch out for the signs you need a bit more steroid.

If they have decided that your adrenal glands aren't in a position to do all that, the most likely action is that they tell you that you will need to take a small dose of pred as a replacement, or they may suggest switching to hydrocortisone which is felt to have fewer side effects as it is in the body for less time and also is more likely to encourage the adrenal glands to function again.

But in some ways, if they decide to keep you on pred as replacement therapy - you are right down to 2mg pred for PMR! It isn't all bad...

messing around with my touch screen laptop I may have "reported" this answer, if so, apologies and hope the moderator ignores!

I think he probably would let me off with a fair bit - however much you try to get rid of me