Adrenals?

[Kendrew]

So I'm almost at the end of my taper down to 4½mg of pred and have been feeling increasingly more fatigued since the beginning of the year when I was on 6mg.

I've had no PMR pain and all my blood tests have remained within normal parameters. However, since beginning latest taper, I've felt more fatigued than usual and really weak on some days. Although I'm eating, my appetite has diminished and I feel nauseous at times. My lower tummy also has felt a bit unsettled...not acidy...just a bit gurgly and gassy.

I've read the info on adrenal insufficiency in FAQ'S and my symptoms do seem to reflect some of what's said there.

I just wondered if people agree with me?

I have my next rheumatology appointment on Thu and thinking it might be worth asking for a basal cortisol test....or is that not necessary at moment.?

Thanking you in advance for any advice offered.

[DorsetLady PMRGCAuk volunteer]

As I’ve said many a time -I used to get random bouts of fatigue (no other symptoms) for about 8months during my taper from 6mg to 3mg. At 3mg they disappeared….

Following advice from this forum, I just continued tapering slowly and didn’t bother with getting a test as didn’t have any other symptoms.

You can ask, to put your mind at rest, but I would say they are working, but still stuttering. .and you may not get referred for follow up ACTH test until you get to 3mg.

[Kendrew in reply to DorsetLady]

OK. Thank you.

[PMRpro Ambassador]

I'd say adrenals. Rod Hughes likes to keep patients at 5mg for up to 9 months to let the body catch up as that is theoretically low enough to prod the adrenal function into life but is still reasonably safe.

You could ask for a basal cortisol - which will almost certainly confirm what you suspect from the symptoms - but it will mean more the lower you get. No fancy testing needed, just a blood sample, so why not? And you can try to get the GP to do one if the rheumy is dismissive.

[Kendrew in reply to PMRpro]

Thanks. I'll chat with rheumatologist first. No idea who it'll be now the Prof has retired! Could be interesting!

[123-go in reply to Kendrew]

Keeping everything crossed for you 🤞🏼xx.

[Kendrew in reply to 123-go]

Thankyou ❤ 👍👍

[Longtimer]

Definitely sounds like the dreaded adrenals to me. As for the tummy, I'm sitting here with the same feeling.....Have a test and see......good you have got 4.5mg.....hope things ease soon.

[Kendrew in reply to Longtimer]

Thankyou. I don't feel anxious or 'down' like some people have at this stage. Just more out of sorts than usual for me.

[Longtimer in reply to Kendrew]

I always think if something carries on, better to know why...adrenals amaze me the power they have over us!....

[Kendrew in reply to Longtimer]

Me too. Can feel a bit scary though knowing that they 'influence' so much! It's always interesting to discover as much as you can...... understanding adrenal function (and dysfunction) can surely only facilitate more effective management of this stage of the tapering, and I'm all for that! Very happy to learn as much as I possibly can from others!

[Longtimer in reply to Kendrew]

After 10 years on pred and being told no inflammation on the scan, I thought , now to slowly lower and I will be off them......little did I know this would be the hardest part, because in my personal opinion, there is nothing to treat fatigue!.....which is the biggest battle. Everything in life needs energy to a certain extent.....I keep hoping that with every slow drop, I will start to feel a bit better with just a little energy.......

Some people get through the adrenal stage easier...fingers crossed!

Sorry to moan on....

[Kendrew in reply to Longtimer]

No, don't apologise. It's helpful and reassuring to hear other people's experience. I understand completely what you mean. So many symptoms/side effects can at least be eased if not completely eradicated but there's nothing to effectively diminish the fatigue once it presents itself.

We can rest, but the fatigue is still there and as soon as any level of exertion is resumed, the fatigue becomes evident again.

This morning, I actually found it an effort to hold my bath towel up long enough to dry myself properly...it's actually a bath 'sheet' so heavier than a bath towel, but really??? Makes me sound so feeble!

[PMRpro Ambassador in reply to Kendrew]

I have a very old beach swimming towel - so old it is wearing through and has a big hole - but it is the perfect size to wrap round for drip drying and doesn't weigh a ton ...

[Kendrew in reply to PMRpro]

Do you know what??..... that's a brilliant idea....bigger than an ordinary bath towel but smaller and lighter in weight than my bath sheet! Haha!... the simplest ideas.......👍👍👍

[PMRpro Ambassador in reply to Kendrew]

I'm too mean to chuck it - love it to bits! And it's pink ...

I only use the ancient, dry anything in seconds towels, some are 50 years old! And I have 40+ year old terry nappies, not used as nappies mind, which are fantastic

[Nextoneplease in reply to Kendrew]

Hi Kendrew 😊

I’m still at 11mg and I couldn’t manage a bath sheet 🤷‍♀️Like Pro I tend to use my older, more worn and therefore lighter towels…..Guests get the better ones. And yes, I do feel feeble, know what you mean….but needs must xx

[Kendrew in reply to Nextoneplease]

Thankyou ❤ It's genuinely reassuring to hear others have felt as physically weak as me too. It just seems so daft to not have the strength to hold a towel up.

Any suggestions regarding the hairdryer??

[PMRpro Ambassador in reply to Kendrew]

I used to prop my elbow against the wall. But then I gave up and embraced the natural look. Curls ...

[Kendrew in reply to PMRpro]

What I'd give for curls. Mine is so straight! No life or bounce in it if I don't give it a bit of a lift with the hairdryer. I've been tying it up during hot weather.

[PMRpro Ambassador in reply to Kendrew]

Be grateful - at least you know where it is!! Natural curls of any sort do as they like, the frizzy variety due to PMR and pred are a world apart ...

[Kendrew in reply to PMRpro]

👍

[Nextoneplease in reply to Kendrew]

Umm, mine’s straight, flat and thin 😳 so I go for volumising spray plus a few big rollers. Have to lean on the wall to get the rollers in though, as still can’t hold my arms up properly……it’s a miracle I’m ever halfway fit to leave the house!

[Kendrew in reply to Nextoneplease]

I can get my arms up ok, just don't have the strength to keep them up for any length of time at moment.

[PMRpro Ambassador in reply to Nextoneplease]

I now work on the assumption that people don't REALLY care what I look like! The one thing I did care about was my hair - originally it was curly and long but at some point I went for short. That meant it needed a REALLY good hairdresser - always a struggle in the UK but I had consecutive amazing ones. Then I moved here - worst thig was giving up my guy in Consett! Here - the less said about that the better!!! They can only cut for a blow dry and will spend ages trying to get it to sit as THEY want it. My hair is like PMR - it makes the rules. So during Covid when we couldn't go to the hairdresser I let it grow. Saves a fortune, And people still say how good it looks.

[Kendrew in reply to PMRpro]

I must admit, my priorities have changed since my diagnosis. I used to like wearing a full face of make up and wouldn't dream of going out without foundation and blusher on. Now, I don't bother with any. My skin is healthier and.... nobody noticed the absence of it anyway!!I have to dry my hair because its very fine and looks like rats tails without a quick blow dry. Sometimes I tie it up so I don't need to wash it as frequently.

[PMRpro Ambassador in reply to Kendrew]

I can't stand the feeling of make-up on my skin. Younger daughter is the same - older daughter used more in a day than we did between us in a couple of years! But she seems to use far less now - her skin has improved loads since going vegan and wearing a mask at work probably played a role too.

[Kendrew in reply to PMRpro]

If I go out for a special occasion then I do put some makeup on, but nothing near like the amount I would. I can't stand that 'claggy' feeling on my skin either....and the make-up rubs off onto collars, scarves, coats etc. I no longer wear nail varnish but keep my nails a nice shape. Being liked and respected for having a good heart and simply being a decent human being is far more important than being liked because of what we look like!

No make-up and the freedom to feel like you don't have to follow the crowd is wonderfully liberating.

[PMRpro Ambassador in reply to Kendrew]

No, not even for special occasions!

[powerwalk in reply to Kendrew]

Oh dear god the hair drying!!! Opposite to you trying to smooth my hair, takes me days to work up to it then days to recover, and im not joking!!! Wish there was an answer to it all. Hope you feel a bit better you were doing well.

[Kendrew in reply to powerwalk]

Thankyou. Mon morning and still feeling ropey but hopefully a shower and some breakfast will improve things.

The blue sky and sunshine outside always helps!

[123-go in reply to Kendrew]

Sending positive vibes and also a link that you may find interesting as I know you appreciate being outdoors:outofstress.com/ways-nature...

[Kendrew in reply to 123-go]

Thankyou ❤ A really interesting article. I knew being out in nature was good for you but actually reading how and why is fascinating. I've saved it

[Booklist in reply to Kendrew]

While on holiday I realised how much easier it is to use a travel hairdryer. Much smaller and lighter.

[Kendrew in reply to Booklist]

That's a good idea. I have one I've not used for ages. Will try using that. Thankyou

[Sophiestree in reply to Kendrew]

When I broke my wrist I bought the cheapest hairdryer I could find in Boots which was really light, plus I bought a hairdryer stand as I was at this point one handed in everything as I was in so much pain (long story which ended up with an op to pin the wrist). Like you I have very fine straight hair and I put BUCKETS of products on it for people to think I have just 'washed and go' - if only they knew.I can give you plenty of things I have, finally, found that seem to work.

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

You don’t want buckets of products - too much just weighs it down … but good you’ve found something that works…after all - you’re worth it ! 😉

[Kendrew in reply to DorsetLady]

Hahaha 😂

[Kendrew in reply to Sophiestree]

I actually would really appreciate knowing what you found. Perhaps you can PM me?

[Booklist in reply to Kendrew]

Can't think why I didn't think of it before. I really struggled with my normal one.

[123-go in reply to Kendrew]

You could lay it on the floor and roll across it 😂😂.I can't get on with bath sheets! I've been known to dry off with a hand towel on the odd occasion 🙂.

[Kendrew in reply to 123-go]

Haha!..... I could do that. Trouble is I may never get up again....and if David saw me doing that he'd probably call 999!!!😂😂 Haha!

[Nextoneplease in reply to 123-go]

Ooh I love hand towels! Such a relief not to have to handle all that weight (honestly!) 🥺x

[Kendrew in reply to Nextoneplease]

Haha! As daft as it seems, I would never have guessed that I was not alone in struggling with large bath towels. Just thought it was my problem!

[PMRpro Ambassador in reply to Kendrew]

Doesn't matter what it is - the PMRGCANE mantra fits: You are never alone

[tangocharlie in reply to Longtimer]

Some people don't get through 'the adrenal stage' though, for some they are permanently b*ggered after steroids. Not always a case of hang on and wait

[SheffieldJane]

Definitely Kendrew even the abdominal pain. I suppose the basal cortisol test will show what you expect, an inadequate function. I felt reassured by my emergency hydrocortisone injection kit when this happened to me at 5 mgs. You could request one. I wish I could give you some tips but I have nothing you won’t have tried. I feel oddly energised some days, even after a bad night. This gives me hope that my adrenals are coming out of hibernation. I am having doubts about the added value of my engaging Endocrinologist. Suddenly it becomes all about the Adrenal Function not GCA/LVV. I hope it lifts. 🙏

[Kendrew in reply to SheffieldJane]

Thankyou. Appreciate your thoughts on it all. You've had quite a lot of experience in this area too. ❤

[York54]

I’ve been off pred since January and still get periods of fatigue! I know now to rest for a couple of days. One those days I need a lie down after a shower!! Now I have the pains of old age 😉😉

[Kendrew in reply to York54]

Really pleased for you regarding the pred. Thankyou for your comment. ❤

[tangocharlie]

My adrenal problems started at 4.5

[Kendrew in reply to tangocharlie]

That's interesting considering my fatigue has suddenly ramped up and a few other symptoms emerged that are indicative of adrenals struggling and I've just finished tapering down to 4.5mg.

After 4dys of feeling really rough, I am actually feeling quite a lot better today. The nausea and tummy issues are gone and I'm back to my normal level of fatigue, so maybe a few days resting has helped.

I could also murder a big fat chocolate éclair, stuffed full of thick whipped cream and encased in a big puff of choux pastry........so my appetite is clearly back too!😂

Having another easy day today though and cancelled my lunch with a friend.

I feel I should just add that I do actually eat really healthily and low carb, so as much as I may fancy an éclair, I wouldn't actually have one.....unless it was my birthday!.... or Josh's birthday!... David's birthday!.... the queen's birthday..... anybody's birthday!!!😂

[PMRpro Ambassador in reply to Kendrew]

Go and get one late for my birthday then!!! If I'd known we could have done it by zoom!! My baker does a mean choc eclair - Love bones they call them

[Kendrew in reply to PMRpro]

Haha! Oh joy!!😃........and what a fab name for them. Love bones!

[Sharitone in reply to Kendrew]

Should we all give you our birthdays? Then there will always be an excuse for an eclair!

[Kendrew in reply to Sharitone]

Haha! Oh my goodness 😳 what a fab idea! 😂😂

[PMRpro Ambassador in reply to Kendrew]

We could set up zoom meetings to share!

[Kendrew in reply to PMRpro]

Haha!.... hope you mean the experience and not the éclair.... I don't share my éclairs!😂

[PMRpro Ambassador in reply to Kendrew]

Unfortunately they don't appear to have perfected a technique for sending food digitally - if only!!!!

[Kendrew in reply to PMRpro]

😂😂😂👍👍

[Sharitone]

Every sympathy, I'm another who knows just how you feel. I got down to 4mg without too much trouble, but probably rather quickly, at rheumy's wish. An attempt to reduce to 3.5 was hopeless so I went back to 4 for a month. Have now been taking 3.75 for 2 weeks, with no improvement. How long can it take?! Can't help feeling I must be doing something wrong.The good thing about missing a lot of hair is that you don't need a hairdryer so much!

[PMRpro Ambassador in reply to Sharitone]

If 4mg is good the rheumy should be celebrating with you not pushing you to go further.

[Sharitone in reply to PMRpro]

Now PMRPro, I think you should know better than to think many rheumies would approve of not reducing relentlessly to zero! 🤣But, to be fair, altho he wants me to go down by 1mg per fortnight, he did say this week that I could decide myself. And also, I do have TCZ, so it's probably just the adrenals I have to think about, not flares. And I don't think he's heard of adrenals. If I mention them, he just pooh-poohs me.

[PMRpro Ambassador in reply to Sharitone]

Um - only half of patients get off pred altogether with TCZ. Half of us have other inflammatory mechanisms that don't respond to IL-6 inhibitors because they are so specific in their action. I've had the impression a lot of doctors slept through their physiology lectures!!!!