Hi, This is my first post although I read HU with interest and have learned so much for which I’m deeply grateful . I was diagnosed by a rheumatologist with ‘atypical’ PMR and hip bursitis back in February 2023 largely on the excellent effect that Pred had on my aches and pains. They were unilateral and my blood markers were normal, although I am ANA positive. Since then I’ve developed cutaneous vasculitis which steroid cream has cleared.
I was started on 15mg and am currently on 6mg. Recently I have unpleasant pains in my thighs when I walk and some minimal discomfort in my hips. My dermatologist has said it could be steroid myopathy so increasing steroids is not necessarily a great idea. A few days ago my neck also began stiffening up/ being achy although that could be due to having slept on my stomach I suppose. I know I’m very deconditioned. I used to dance 3-4 times a week back in 2022 but now only walk (although around 10,000 steps most days). My recent attempt at a gentle dance exercise class ( half done on chairs) resulted in bad back pain and limited movement for several days. I am fatigued all the time.
I’m just wondering whether I should increase my dose and if so to what and for how long? (I had bad insomnia when taking over 10mg which I’m quite keen to avoid). Could it be steroid myopathy and if so what does one do about it? I’m due to see my rheumatologist again in a couple of weeks but would welcome your wisdom. Appreciate any advice from you experts out there. Thank you.
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BadDancer
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But to be at 6mg as quickly as you are would say the other issues may be to going below the dose your illness actually requires- and could be a flare. This link contains info on how to deal with that- you are only on increased dose for no longer than 14days [so hopefully won’t impact sleep] - and maybe down to 7mg not 6mg… and reduce by only 0.5mg in future-
It does sound like you may be on too low a dose for the time being. I think I would increase by 5mg for a few days and see if things improve. If it does you can then drop back to the dose that you last felt OK.
Sounds much more like 6mg is slightly too low for the current activity of the underlying autoimmune disorder and it is allowing inflammation to build up enough to cause symptoms.
I developed steroid myopathy on one particular type of corticosteroid - and once put on prednisone and starting walking the myopathy reverse. Walking really is as good as anything. I was doing FAR less than 10K steps.
Does the thigh pain worsen if you climb stairs? If you stand after sitting for a while do you have to straighten your legs slowly and hobble for a bit before you can walk properly?With the neck, does the stiffness spread up into the muscles at the base of the skull? Do you have difficulty turning your head from side to side?
If yes, then l would agree you are experiencing PMR symptoms. It may not be a flare but likely that you have overshot your optimal dose. Remember PMRpros bucket and dripping tap analogy? Follow Piglette's advice and increase for a few days then drop down again in steps to around 7mg and stay there for at least 2 weeks. Reduce by 0.5mg thereafter using our 10% rule and don't reduce unless you are significantly pain free.You are only 8 months into this so it's still early days for you.
Thanks so much for your reply and advice. The main issue is the pain that starts largely in my thighs (at the front) after I’ve been walking for a few minutes and continues until I stop. Did not have that when all this kicked off. I press on as I feel I should stay somewhat active but it’s not a pleasant experience. Yes, it is uncomfortable turning my head side to side, and up and down, and the top right of my head is tender. So difficult to know what is causing what….
From experience, and I've been on this road for 6years now, you are experiencing the effects of what we call PMR. Put very simply, the amount of inflammation being created every day is not being held in check by your current dose of Pred. The reason your muscles hurt with exercise is because the blood vessels are inflamed and the oxygen/ carbon dioxide/ lactic acid clearance and transfer is not optimal because of the inflammation. Sadly trying to maintain your "normal" degree of activity could cause muscle damage and you don't want that! I hope your Rheumy agrees with all of us, but your symptoms are typical of PMR and I've been there so many times my tee shirt is getting a bit worn out !!
That’s a really helpful explanation thank you. And perhaps fits with my now having developed lymphocytic vasculitis which I’m told is inflammation of the blood vessels. So less activity and more Pred would seem to be the best course for now. I am grateful. I look forward to being able to dance again one day…. And sorry to hear you’ve been on this path for 6 years. Wish you well soon.
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