Advice on back pain & pred dosing...

[Ruthie64]

Morning, i joined this group a few months ago and find it so useful even though I don't have pmr. I do have tertiary adrenal insufficiency, ulcerative colitis, osteoarthritis and fibromyalgia and possibly pots. In the last 2 years after having covid twice I developed cushing symptom due to over replacement of prednisolone. I still have them, the belly, buffalo hump, excessive sweating on slightest exertion and weight gain. My lower right back has been extremely painful the last 3 months to the point I can't walk far at all. 4 sessions at the osteo and exercise at home and it hasn't improved. The last 2 nights I tried taking 15mg pred at 2am to see if it would improve the pain. It hasn't. Does it take a few days to work? I'm normally only on 10mg pred (trying to taper to 7.5mg) which I was splitting 3 or 4x daily for the AI but I'm so desperate for this pain to go I thought I'd tried the once daily at 2am. I did not have any low cortisol symptoms during the day so think once a day is enough for me. Not sure if splitting it so much contributes to the cushing symptoms? I also get hip pain so going to ask my gp for blood tests to test esr and crp levels and maybe request a mri for my back. My last dexa scan was great but obviously things have changed since then so will ask for that too. Would just like advice really. My last blood test in August tested negative for rheumatoid arthritis markers. I just seem to have fallen apart over the last 2 years and desperate for a life again. I've just been put on beta blockers for a high hr too.

[PMRpro Ambassador]

Hi and welcome - glad we can help others besides PMR patients.

Have you had your back problems assessed separately by a doctor at all yet? It very much depends what the underlying cause is for pred to work. A common cause of low back pain is piriformis syndrome - is that what they gave you exercises for? Where on the hip is the pain - if it is on the outside so it hurts if you lie on your side it could be trochanteric bursitis, In theory exercises will help piriformis and the bursitis but if there is a lot of inflammation it can just make them worse by irritating the inflamed area. Pred does sometimes help when it is inflammation - does for me but it only takes away part of the low back pain and often you need a lot more oral pred to get the effect, A steroid injection uses much less as it is targeted at the area that is inflamed.

It's miserable - you have my sympathy!

[Ruthie64 in reply to PMRpro]

I have had my back assessed by a back specialist at my gp surgery. I do have mild scoliosis which doesn't help and that causes more pressure on my right side. Yes it's piriformis exercise they've given me and yes I seem to be worse after doing them. I cannot walk properly due to the pain either. The pain in my hips can come when I walk, more at the front when I walk but more often than not it's worse in the morning when I wake and lying down on the outside of my hip.

[PMRpro Ambassador in reply to Ruthie64]

I have a scoliosis too - and that royally messes up my back muscles! And yes - walking is bad as a result and that just compounds it all. I will do anything to avoid stairs at present too! When I can get to pain-free the difference in how I walk is amazing! On a less good day I can feel the hip pain coming on and I am scared to walk too far in case I can't get home - I live alone so no-one to come and rescue me! I have just bought a snazzy rollator to see if that helps - I can't carry more than a litre of milk if I'm walking which is rather annoying so the rollator is also a shopping trolley! But I have to work up to it ...

That all sounds very trochanteric/iliopsoas bursitis -ish and it is beyond where piriformis stretches will help. They don't seem to get that. I spent a small fortune on a chiropractor here a few months ago and while it wasn't a miracle, it definitely changed the type and position of the pain so I'll take that. I need to get my rheumy, pain clinic lady and the rehab doctor together in a room and get some sense out of them!!! Not going to happen. I could get the pain a lot better but they won't let me use ibuprofen, which works best, or steroid injections as I am on anticoagulant medication.

If I were you I would ask to try steroid injections - and an x-ray as a start to rule out some other things. Unfortunately even MRIs don't always show problems in soft tissue.

[Ruthie64 in reply to PMRpro]

Thank you so much for your reply. I can't take nsaids due a blood thinning disorder and dysfunctional platelets so it's just Cocodamol for me which I think I'm immune to now lol. And yes I can't carry too much either. It's so frustrating. I would love to get all my consultants in a room together!!! Do you think I should continue with the 2am dose of 15mg? It's disrupting my sleep a little I have to say but it's only been 2 nights. I was taking 3 doses, 5 at 6am, 2.5 at 2pm and 2.5 at midnight. The midnight dose helped my sleep massively but don't really think I necessarily need 3 doses a day 🤷🏼‍♀️

[PMRpro Ambassador in reply to Ruthie64]

When it is for A/I replacement the 3x daily dosing is supposed to mimic normal adrenal function better, So in many ways we are in the same boat for pain relief - I can't take codiene, makes me ill, and paracetamol does zilch unless as an infusion and then it is brilliant! I have had enough relief from 10mg pred to notice it but since the whole idea of another medication is to get to a low dose of pred I'm not sure how my rheumy will view it - but I need to be mobile or I am simply stuck in the house and going shopping for food even is a pain - literally!

I think it is worth trying for a bit longer, it is the best antiinflammatory there is after all. But I think your doctors need to put their thinking hats on too.

[Ruthie64 in reply to PMRpro]

Many thanks for your advice 🙏🏻

[PMRpro Ambassador in reply to Ruthie64]

My pleasure - we have such similar problems! Hopefully we will find a solution.