Possible Adrenal Insuffiency

[susanspurs]

Some advice please. I’ve been on prednisolone for PMR since 2014. I’ve been stuck on 5mg for maybe six years. I now have two compression fractures in my spine and multilevel degeneration, so I’m trying again to reduce using Dorset Lady’s simple reduction over five weeks - that’s 0.5mg over five weeks and I’m seven weeks in so another three weeks to go until I’m down to 4mg. Since Wednesday I’ve been feeling much more tired than usual, poor appetite, feeling sick with stomach pain and my bowels are not right. It’s hard for me to tell as I had major bowel surgery in 2012 and have had seven adhesive bowel obstructions with similar symptoms - but it normally progresses more quickly and the pain and vomiting are much worse. Re aches and pains - it’s hard for me to tell because of osteoarthritis now in shoulders, hips and knees - I’ve had three unicompartmental knee ops - last one went wrong with a crushed tibial plateau. So I’m a bit of a mess. Could my ‘new’ symptoms be adrenal insufficiency? Should I go back up to 5mg before contacting my GP/rheumy on Monday. It’s so difficult with a complicated medical history (there’s quite a lot more) to know what’s going on. Some advice would be much appreciated.

susanspurs

[piglette]

If it is adrenal problems I would stay at the same doze unless it gets too much.

[agingfeminist]

can I suggest you try the "what if it were someone else" trick...a close friend/child/partner comes to you and explains their medical history and describes their present symptoms (all your of course). Then they say to you "what should I do?"

I did this when I had some very severe and odd arm and necks pains...5 minutes later I was in a taxi to hospital...and discovered I was having a heart attack. It helped for me to think about my condition as someone else's. I hope this doesn't sound nuts.

Anyway, bottom line, I would definitely have a conversation with my GP.

I hope you feel better soon!

[random901]

Hi susanspurs! Possible band adhesion needs checking. My second and third were caused by scar tissue from the first lot of surgery and I've had some of my gut removed. It's awful when you're suffering from so many conditions, I know. Hope things get resolved for you soon.

[DorsetLady PMRGCAuk volunteer]

If it is adrenals alone, then maybe just ‘tread water’ on the taper, so don’t reduce any more just repeat the current stage until you get medical advice.

[susanspurs]

Thanks everyone. I’ve taken 4.5mg this morning as I felt ok on that and I’ll speak to my GP in the morning and email my rheumy too. I really don’t think it’s my bowel this time - I would be in hospital by now. Dorset Lady I read your piece on adrenals - it was really helpful. Weirdly I’ve been fancying crisps and adding extra salt! I’ll definitely try the “what if I were someone else” thinking.

[PMRpro Ambassador in reply to susanspurs]

"Weirdly I’ve been fancying crisps and adding extra salt!"

I think I would take that as confirmation that your adrenals are struggling to keep up. If you have been on pred for 10 years and stuck at 5mg for 6 of them - I think your body is telling you that your adrenals are enjoying their holiday too much! My rheumy told me he doesn't expect me to get under 5mg even with Actemra which is a comfort when every time I have attempted 6mg I have been driven back to 7 after about 3 or 4 weeks by aching biceps and increasing elbow bursitis.

[Louisa1840 in reply to PMRpro]

Dear Pro, Do you remember, some years ago now, when you quoted Professor Dasgupta who said he's not that bothered if pateints stay on 5 mgs for the rest of their lives? I wonder if this race to get to zero could be alleviated by that quote again...?

I wonder where more up-to-date thinking is at?

[PMRpro Ambassador in reply to Louisa1840]

No, not 5mg, 2-3mg is what he is happy to use long term to avoid relapses, and I do refer to it repeatedly. There is research that suggests that 5mg isn't as innocuous as they thought and there is no doubt that getting as low as possible is advisable but when it comes to adrenal insufficiency there can be less argument about the dose a patient requires.

[Louisa1840 in reply to PMRpro]

Aah! Thanks for clarifying that Pro. I've got a couple of mgs to go then.......

[susanspurs]

Second day back to 4.5mg and I’m already feeling much better. Sickness seems to have gone and my tummy seems to be getting back to normal. Can that 0.5mg make such a difference and so quickly? How long do you think I should stay on 4.5mg before trying to reduce again? I trust your advice more than the doctors. So far I’ve refused methotrexate. I’m on so many meds for all my different conditions - they all have some side effects and I’m due to start Romosozumab for my osteoporosis. So now doesn’t seem the time to start methotrexate so that’s why I was trying to reduce my steroids. Oh it’s all so complicated 🤷

I do appreciate your help.

[DorsetLady PMRGCAuk volunteer in reply to susanspurs]

Yep… and yep. 😊… and as I said maybe put taper on hold for a week…see how you feel then. You may be able to pick it back up where you were, or go back couple of stages. Really no rush once you get below 5mg…in fact the slower the better….

[susanspurs in reply to DorsetLady]

Thanks

[PMRpro Ambassador in reply to susanspurs]

It can, yes! There is absolutely NO indication for introducing another heavy duty drug when you have got below 5mg on your own. And it isn't the PMR causing the problem but adrenal function so MTX doesn't really have a role to play there. It is all about time and riding out the awfulness of adrenal insufficiency. I'd give it at least a couple of months before trying again and use one or other of the slowed tapers where you introduce the new dose very slowly.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

SS is already using my taper - but as I often say only helps you get lower more easily -if you’re too low you’re too low…😊.

[PMRpro Ambassador in reply to DorsetLady]

I was thinking more in terms of your extra long, extra slow approach ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yep..agree…