Shoulders to thighs!

[Zhenya]

Hello

I’ve had PMR for 6 years. Started on 15mg pred, which did the trick. Got down to 5mg with a few flares and increases in preds along the way, but never managed to get below 5mg without a flare. My pains and stiffness were always in my neck, shoulders and upper arms. Two months ago I started getting stiffness and pains in my thighs and bottom and now have difficulty walking. Rheumatologist said to increase to 10mg. This helped a little but not a lot so I’ve been ‘allowed’ to increase to 15mg. This has helped more but rheumatologist doubts my symptoms are PMR ( my inflammatory markers are low, but then they always have been) and doesn’t want me to increase further. My question is... can it happen that the PMR moves from shoulders to thighs and what harm would it do to try 20mg to see if my symptoms improve? Why are rheumatologists so dead against increasing steroids if only for a short time?

Many thanks

Zhenya

[PMRpro Ambassador]

Because THEY don't have live with the pain!!! What harm? None for a week - and even then you won't be within miles of my cumulative dose after 11+ years! I haven't crumbled in a heap yet.

I find each flare is a bit different - and several others have said in the past it is for them.

Could it be due to myofascial pain syndrome affecting the piriformis muscle? Piriformis problems can really go for bum and thighs if the sciatic nerve is being pinched.

[Zhenya in reply to PMRpro]

Thank you PMR pro. I don’t know what we’d do without you! I will mention myofascial pain syndrome to my rheumatologist and gp.Take care

Yours

Zhenya

[Griggser]

Hi Zhenya, sorry to hear your struggling. I’m in a similar position, started on 15mg 6 years ago and have never gotten below 12mg. Initially the pain went almost completely but I’m living in constant pain in my shoulders and hips. Sleep is allusive, walking is no fun and exercise forget it it. Now the rheumatologist is saying I might have to come off steroids! The colder damper weather doesn’t seem to help. I’ve always felt better in the winter when we have been able to spend January and February in Lanzarote but theres not even that to look forward to with the pandemic 😷

[Zhenya in reply to Griggser]

Thank you GriggserWe sound like we’re in the same boat, not only battling against the PMR but also the rheumatologists who simply want us off the steroids. I too have found that warm weather improves my symptoms.

[alansouthworth42]

Hi Zhenya, I am much in the same position as you, I have had PMR for eight years and have been on a maintenance dose of 5mg of prednisolone for some years, boosting to 20-30mg if a flare up occurred, however in recent times my GP has suggested reducing the 5mg slowly in order to wean me off altogether due to the immune system being compromised. I have reduced to 2mg per day but the PMR has returned to my neck, shoulders, upper arms and wrists with a vengeance, like you my GP is not convinced it is PMR as my ESR levels are normal, he seems to think my muscle pain is general arthritis. I have taken the liberty of writing to my Rheumatologist for her opinion and suggestions.

[Zhenya in reply to alansouthworth42]

Thank you AlanThat’s interesting that you’ve been able to boost up to 20-30mg with a flare. I would like to give that a try and will ask my rheumatologist although all he ever wants me to do is come off the steroids altogether.

[alansouthworth42 in reply to Zhenya]

So many conflicting opinions by so called health professionals, many GPs admit they know very little about PMR or how best to treat the condition.

[Zhenya in reply to alansouthworth42]

Please may I ask... how do you get down from 20-30mg after a flare?

[alansouthworth42 in reply to Zhenya]

I normally reduce over one week until you are back on your maintenance dose, works for me.Hope this helps.

[Zhenya in reply to alansouthworth42]

By ‘Reduce over one week’ do you mean you take less each week and if so how much less please?

[alansouthworth42]

Hi Zhena, I just reduce as evenly as possible ie if I have boosted to 30mg after a 'flare up' I reduce by 5mg per day until I have reached my maintenance dose of 5mg per day. Hope this helps.

[Zhenya in reply to alansouthworth42]

Thank you yes that helps.