Has PMR gone ?????????

[billydownunder]

Seen my Rheumy yesterday for blood and bone density test results........

All real good (except for adrenals)...........He says PMR looks like it has gone...well maybe........?????

If that is the case ......the legacy for my app 18 year PMR and prednisolone journey (except for weight gain and skin bruising etc etc) is mainly Severe Hypoplastic Adrenal Glands...

In layman terms i think that means they could be stuffed...........

All my present aches and pains do not really seem PMR related i am sure........

So to help combat the supposed adrenal fatigue, i am to up the Pred from my present 7Mg to 10Mg and see how it goes till i see the Endo bloke shortly to find what the go is ,and, if any thing can be done about the present adrenal situation ......

[DorsetLady PMRGCAuk volunteer]

Not sure your Rheumy can say your PMR is gone whilst you are still on 7mg…..your inflammation markers should be good if the Pred is controlling that part of your illness. He could be correct, let’s hope he is, but the acid test is to get to zero and stay there for a few months without a return of symptoms.

However presumably you are going to need similar medical for your adrenals ….good luck with Endo appointment.

[billydownunder in reply to DorsetLady]

Yep , i think it is a wait and see situation............

[PMRpro Ambassador]

Given the time scale - very possibly but there is no way the rheumy can know if you are still on 7mg - the only test to know it is gone is to get off pred without a return of symptoms.

His label means the adrenal glands are atrophied - has he done imaging to have a look? 7mg is a quite usual dose of pred to manage adrenal insufficiency, in fact 5mg is often plenty, and I don't understand why he is increasing the dose unless he hopes that will improve fatigue. An endo is likely to suggest trying hydrocortisone in a split dose over the day which might tickle the adrenal glands into life and give better control of symptoms - it will be interesting to see what they suggest. Must you wait long?

[billydownunder in reply to PMRpro]

The increase in pred at the moment is purely to help combat fatigue ...........any exertion at present really knocks me for a loop ..............Next week to see the Endo bloke........ A ct scan and tummy X/ray a year ago (for an unrelated thingo ) showed the glands had shrunk ..the latest blood test showed low cortisol levels..........no tests other than those , mainly speculation on how i am feeling , i assume............

[SnazzyD in reply to billydownunder]

Hello, when you say “any exertion” what do you mean. What level? Might also be worth reading the replies to your post “Adrenal problems”. There is no easy way of getting through the difficult neither here nor there dosing level around 7mg. My life was a bit of a snooze fest for the best part of a year as I navigated my way down to below 5mg and the adrenals finally got the message. As Dad2Cue says, it would be interesting to know how shrivelled the adrenals can get and still be able to bounce back.

[billydownunder in reply to SnazzyD]

Any exertion ??????? good question. After the 35 k bike ride two days running i was in bed for two days with dizzyness , head ache, nausious ..took about a week to recover.Changed a wheel on the car , by the time i was finished i was that dizzy i couldnt stand,. head ache and sick. .......next day mowed the lawn and was ok... If i am lying down and get up , no problems.........I know,,,, it sounds crazy........ Looks like i might have to have a more in depth read , as you say .......

[SnazzyD in reply to billydownunder]

The trouble with 10mg for many is that it can make you feel pretty darned invincible as it is not so high you get the worst of the side effects but high enough to give you a boost of extra cortisone that hides the fact that your own cortisol production is non existent, but you can still go mad with activity with not many obvious consequences. If you go below 10mg that honeymoon period starts to fade and you are faced with the reality that needs to be dealt with. If you are not getting that artificial boost you can’t then do your bike rides without paying for it. This transition period until your adrenal function returns can be hard and can’t be short circuited. You have to slow down until your adrenal glands speed up. Unfortunately nobody tells you about this bit and one thinks that once under 10mg it’ll be a short hop to zero while one goes like the clappers reclaiming life that was snatched away for a bit. Yes, you can alternate dosages or go onto hydrocortisone but all that does is take away the ‘sugar’ in the hope the adrenal glands notice. While you wait for that message to go through you have to listen to your body as to what it can cope with. Popping back up to 10mg to be able to live life on your terms just delays the inevitable and worse, might make it less likely you’ll regain function. None of what you are saying is a surprise.

[billydownunder in reply to SnazzyD]

HHmmmmmm ...........that sounds pretty fair to me........... yep ,it does feel good to up it a bit, but as you say, i guess it really is counter productive ..........thanks.

[PMRpro Ambassador in reply to billydownunder]

OK, I get that - but leaving it that high means you will never get through this stage. Snazzy speaks from personal experience. And changing something immediately before seeing a different specialist is also not particularly clever.

[billydownunder in reply to PMRpro]

Maybe i have given in too easy........Yep i thought about raising the pred , and agree with you. I have gone back to the old dose of 7 till i see the endo. bloke.......

[PMRpro Ambassador in reply to billydownunder]

No - Reading your list above - I think you are really being totally unrealistic about what you can achieve AT THE MOMENT. It doesn't mean things won't improve but softly softly catchee monkey might be a good approach to adopt. Very few of us could even think of a programme like you describe and most of us are 15 years or so younger than you. I fear one thing none of us can escape is aging - unless we don't get that far.

[billydownunder in reply to PMRpro]

I hear what you are saying.........i have always been able to do what ever was required........so not being able to do things comes as a surprise...or annoyance.. Actually all of this latest problem only started rather suddenly a couple of months ago ...........

[DorsetLady PMRGCAuk volunteer in reply to billydownunder]

Its very frustrating isnt it...but go with the flow, and hopefully things will improve.

[PMRpro Ambassador in reply to billydownunder]

So have most of us - and yes, we know it comes as a nasty shock. But as DL says, go with the flow, and it that means doing less, or doing it less often, it will feel less exhausting.

[piglette]

I really begin to wonder how much some of these doctors know about drugs. If you are taking 7mg of steroids, in my opinion, there is no way they can definitely say that PMR has gone, unless they have a hot line to a clairvoyant.

[billydownunder in reply to piglette]

I hear and agree with you . ............if i have to continue with some sort of cortisol stuff for the adrenal problem, ,i may never know...............

[billydownunder]

Good luck, My rheumy is mystified why after all these years, the adrenal glands have suddenly shrunk (my GP just says it your long term pred use )....which no doubt is not going to help......... Your case of smaller adrenals makes me wonder how small do they get before they stop working .......I assume a scan will only show the outline , not the output .........

[PMRZ]

I don’t have PMR (my partner does) but I had Post-viral a few years ago and was off work for 6 months. I tried lots of things for the fatigue. Eventually I went to a reflexologist who said ‘your adrenals are like dried up prunes’! After 10 sessions I really felt as though I had a lot more energy so it’s worth trying different complimentary therapies.

[billydownunder in reply to PMRZ]

Yep,.......But i guess only one treatment can be tried at a time .......

[PMRZ]

Absolutely! And if you do try reflexology, make sure they are very experienced. When you have very low functioning adrenal glands it needs to be very ‘light touch’ to start with!

[Nextoneplease]

Hi billydownunder 😊

I can’t add much to the great replies you’ve had - except to say I’m glad you’re staying at 7mg until you see the endo.

Just wanted to say I love the positivity of your posts and I wish you good luck with both PMR and adrenals. You’re an inspiration- 35k bike rides indeed! All the best x

[billydownunder in reply to Nextoneplease]

(35k bike rides indeed)...................and loving it.................