upping steroids short term to boost recovery?

[Gottarelax]

writing on behalf of my mum who is getting over a respiratory tract infection (or not getting over it to be precise). She has long PMR (getting on 40 yr) and is constantly trying to reduce pred. I recall reading in this forum a recommendation to temporarily increase dose when ill / having surgery etc. Can anyone point me in the direction of guidelines for this - I couldn’t locate the right post by searching. Thank you.

[SheffieldJane]

you want FAQs which appears below your post and above mine on this screen/page. Look for Sick day rules. What is her dose? I tend to add 5 mgs for one to two weeks and then return maybe to 1 mg higher than where I was.

I have never heard of someone being on Pred treatment for PMR for 40 years. It smacks of mismanagement along the way. How did it happen?

[Gottarelax in reply to SheffieldJane]

Ah that's it...sick day rules. I'd forgotten the term used. Absolutely mismanagement. She only had a rheumatologist for the first few years and then it was PMR with one rheumatologist and not PMR with the next (and immediate withdrawl from a high dose of steroids). She did however develop GCA which tends to suggest PMR may have been right. After a couple of years she was in the 'care' of a string of useless GPs who never thought to check why she was still on pred or refer her back to the hospital. They tended to say 'you know how to manage your steroid dose better than I do so crack on''. She's been in a constant cycle of up to high doses and struggling to get back down to 5mg or less. Her GCA resolved and then came back about 10 years later. At last she has a good GP and had a rheumatology appointment but you know how slow that process is.

[SnazzyD]

Can you give some more detail? What were and are her symptoms and what happens when she reduces?

[Gottarelax in reply to SnazzyD]

She is recovering from a bad cold and just not getting over it...it's been 4 weeks now. She's lethargic and just generally feeling too weak to do anything. She has a cough too. She is very careful about managing her steroid dose for her joint/muscle pain and is with the suggestion of her rheum not going below 5mg to avoid symptoms of adrenal insufficiency.

[SnazzyD in reply to Gottarelax]

That cold could have been Covid and a doctor told my husband who was similarly afflicted that chest issues have returned as a commonly associated issue again. This far on from the start of the cold, I might be asking for a chest x-ray.

[PMRpro Ambassador]

What dose is she on though? The current dose is important.

If she has a URTI - was she not given a short course of high dose pred along with antibiotics?

How old is your mum? 40 years of PMR suggests quite a young diagnosis and does make us wonder if the diagnosis is correct. I'm not saying it isn't, I have had it for nearly 20 years and it hasn't gone away so isn't that likely to now, a very small percentage do have it for life. But after 20 years her adrenal function is likely to be very compromised so her attempts to reduce the dose may be in vain.

[Gottarelax]

Mum is just coming up 80. She started symptoms early 40s and diagnosed PMR about 5 years later. She then went on to develop GCA. It resolved after about 10 years treatment and then both came back after about 5 years and she's been on steroids since then. She is not reducing beyond 5 mg due to adrenal function but even getting there is tough. I do also question the diagnosis as I have RA and very similar symptoms (I thought it must be early onset PMR for me too) The difference is I'm seropositive and she isn't. When I was going through my family history with my rheumatologist, he was of the same opinion. She was fortunate to go see the same rheumatologist (first rheum appt in about 30 years) who is considering alternative treatments but in the first case wanted to see how she does on 5mg (he advised that she'd never go below that but that at that level the side effects are comparatively minor).

She's not been prescribed antibiotics (she has had her chest listened to) and GPs don't seem to have a clue when it comes to prednisolone dosage (at least not the ones she sees).

[PMRpro Ambassador in reply to Gottarelax]

Has the GP done a chest x-ray? She needs one if it isn't clearing. No doubt it was the usual "it's a virus so abx aren't appropriate"? However, a secondary bacterial infection is a possibility. It can take weeks for a cough to go away, at any age, the elderly are likely to take longer and a cough is very debilitating. I think a bit more action by a GP is required.

However, I would have thought Sick Day Rules apply to her since the rheumy has obviously - and quite rightly - decided she will have adrenal insufficiency. The lack of a spike of cortisol may well be slowing her recovery. Few GPs seem to be aware of the risks for long term steroid patients - despite the best efforts of the Endocrine Society in introducing the new red emergency card when they discovered that HCPs of all sorts were ignorant of them. We've even heard of GPs who disdainfully tell patients they haven't got Addison's Disease - no they/we don't: we have adrenal insufficiency secondary to long term steroid use. Different cause - same effect! 5mg is supposed to be plenty for day to day living - I struggle in it when I have even minorly stressful things to do. At 6mg I feel reasonably OK most of the time. Still fatigued though.