Has anyone any experience or advise about Steroid Myopathy? Still on a high dose of steroids 27.5 currently due to flare post 2nd bout of Covid this year (was slowly getting better then wham), but 99% I have now developed steroid myopathy as have all the symptoms and Mr Hughes feels it fits the picture. It’s taken all strength and power out of my legs, pelvis and arms and I can barely get up the stairs, rise from a chair and cannot walk far at all. it’s come on gradually over the last few months but also have high PMR symptoms, hard to know what’s. Feel so stuck as the only way to improve the steroid myopathy is to reduce/come off steroids but as we know I can’t do that, certainly not quickly. But still in a lot of pain even on 27.5 pred, scared t on reduce but then as I’m still so sore is the dose high enough! Just not sure what the do, seeing Mr Hughes again in 2 weeks but have never felt so ill at any point on this journey 😐
Advice : Has anyone any experience or advise about... - PMRGCAuk
Advice
Have you been checked for overlapping auto immune diseases?I wasn’t getting any better and I went to a Rheumotolgist and I have been diagnosed with Myositis with overlapping schlerderma , RA, Lupus, and PMR.He put me on Plaquenil and Lefluonide and I am feeling better.
Thank you for you reply. No checks yet but when I last saw the consultant he mentioned trying Lefluonide next. My mentioned steroid myopathy which I had never heard of when I saw him early May, but we didn’t explore further at the time. But when I got home and looked it up I have absolute classic presentation with the leg/pelvis weakness. But then I think that can also be PMR. All so confusing so I’ll just have to wait and see him and go from there.
~Baileyw06 - would you mind telling me how your myositis presented please? I would be most interested to know.Many thanks and sorry to read of all your overlapping conditions - one a/i condition appears to beget another...............
It started with me noticing my legs were weak if going up any incline, gradual slope, up stairs and also getting up out of a chair became increasingly more difficult, especially from a low chair. The weakness has become increasingly worse, now can only do stairs very slowly, step at a time and cannot push up from my pelvis at all. It’s such a bizarre feeling, nothing feels different until I try to use my legs but there is just no strength and shoulders are now going same way. It’s so frustrating!! Pain in hips, thighs, calf’s, shoulders and neck but guess that’s PMR.
~Hmm... can identify with legs & knees 100% - sometimes the calves but not the shoulders and/or neck too much. Almost want to buckle at the knees some days & today wanted to fall over several times.
Certainly these symptoms manifested early last year on & off.
I have always kept my fitness up at home during lockdown just to keep muscle strength.
Long awaited bloods in Jan 2022 came back Feb with early myositis + mildly raised PL-7.
Received the news one week after PVI cryo-ablation surgery to heart so had popped into the too hard basket while I recovered.
I am now wondering if my initial PMR diagnosis Jan 2015 was/is myositis all along or if at some stage I had/have overlapped?
My PMR discomfort was always mild + do-able - this present diagnosis is certainly a weakness I have developed .
Incidentally I have had raised CK enzymes since 2017 but not one professional person could offer any suggestion of what this could be.
Same applies for the scales on skin which peel off & continue ......
It must be said that it was PMRpro who shed light on why CK enzymes could be raised - I am forever indebted to PMRpro's knowledge base 
Please keep us posted ~
" not one professional person could offer any suggestion of what this could be."
You are kidding me????? CK is always raised in response to muscle tissue damage
~Wow & even my own GP said she did not know what would cause the constant elevation in CK levels each time I pointed it out. There was a heavy black asterix that always appeared alongside highlighting from the Lab...........GP indicated that Rheumie should know answer to this~
Yes, I had muscle weakness and could hardly walk. I had a bad attack in North Carolina. My grandson had steep stairs and I had difficulty breathing and getting up them. When I got back, I went to my primary and he said that I needed to go to a Rheumotolgist because something else was causing my problem.I had a great Rheumotolgist and he did a thorough exam and did all the right blood tests.
Could you have injuries as well? Have you has an MRI? Mine showed that I had 2 partly torn tendons and tendonitis in my shoulders and glutes.
Thanks for coming back to me. I have a snapped tendon in my shoulder which makes my bicep slump, called pop eye deformity, plus pretty sure I have rotator cuff tears in both shoulders as have real inner joint pain in both which has progressively got worse over the last 5 years, pre-PMR. But I cannot get my Gp practice to refer for ultrasound/MRI so am having yet another physio assessment next Tuesday.
I’m seeing consultant again on the 25th May so hopefully he will re-evaluate because I just seem to go backwards and I think your right it’s multiple things so hard to know what to target first. How I long for that first dose of steroids where within hours I was me again☺️
Surely they should invest in a full investigation now? I got the MRI via Rheumatology not the GP without too much of a battle.
I'm going to go through everything when I see him on the 25th. Up till now I have been paying privately as had to really fight my GP for a rhemy referral, but I am fortunate in that I have now succeeded in getting an NHS referral for my private consultant. That will get me access to more testing as I really cannot afford private MRI scans etc. Did you receive treatment for your torn tendons and tendonitis?
Good luck! I was assigned to an NHS Physio. Luckily he is based at a hospital 10 minutes from my house.
" have never felt so ill at any point on this journey"
It is strange - it seems a common refrain at present - one I was singing a few weeks ago too. I think the effects of the last 2+ years are finally catching up just to add to the problem.
I had quite severe steroid myopathy when I was switched to methyl prednisolone - only time in my life that I had not quite so fat thighs and bum and my trousers hung on me! It wasn't helped by an achilles tendon problem (also due to the methyl pred) which meant I was using crutches and unable to walk much. However - when switched to prednisone instead and able to walk around the village, albeit very slowly, the loss of muscle did reverse.
All you can do at present I think is do appropriate physio to try to maintain muscle - as is recommended in the guidelines. But do the majority of doctors take any notice? I know that Sarah Mackie's team got an award for their multidisciplinary approach to PMR - and having been in a meeting with her physio I know it is pretty good!
Thank you for your input. Yes it’s strange but seems like multiple low level problems that have been simmering for years have escalated significantly in the last few weeks since last ghastly virus attack. Also have osteoarthritis in my feet causing hammer toe and lots of swelling so can’t walk when bad. In February I was still able to walk 12,000 steps a day with my dog, which I loved and now can barely get his lead on him 🤷♀️ But I’ve accepted it’s going to be slow progress, nothing I can do except work with it. It’s just that challenge of what illness is causing what pain and how quickly can I reduce steroids to help the myopathy without causing a flare when I’m still sooo sore, but not sure what’s PMR pain anymore! I will see what Mr Hughes says on the 25th.
Yes - can identify with that!!! Hope Rod can help
I didn't realise you too had Achilles Tendonitis too. I remember talking to you about my three numb toes on my left foot, which I still have. It's well over a year now since the tendonitis and now seeing a physio. He gave me exercises to do but little help has come out of them. Do you have a lump on your heel ? I do, and sometimes, I've been told this can rupture. I get good and bad days from pain on left foot but always bearable. Wondering if this ever goes away. It appeared out of the blue. Wondering if it's when I thought the kerb was lower than it was and jarred me foot.
No, no lumps Just can feel it pulling when I walk. I have exercises to do but they need a step to do them on and I don't have one in the flat! Not sure I want to risk it in the stairwell of the appartment block! There is a little step on the balcony doors - just have to make sure I don't fall over ...
The rehab rheumy here wants me to use insoles - they come to insert into shoes designed to take them here. He says they are essential ...
At least on the stairwell you’d have a hand rail to hold on to….
Long way to fall though! Or a lot of steps to come back up! I'm off stairs at present - the achilles objects going down and the rest of me coming up ...
Yep! 😊…just be careful wherever you do it…
I have an insole in my left trainer and it certainly does help. I think mine is playing up due to being on my feet all day to-ing and fro-ing for hubby. Roll on the surgery date to at least get one hip done.
I developed myopathy 18 months ago because I had a flare by trying to reduce too quickly (same symptoms - could hardly get up from chair or climb stairs). I increased the dosage by 5mg and it sorted it within a week. Suggest you try the same approach.
Hi, thanks for getting back to me. Sorry, I didn't give all the information. I had increased from 25 - 30 mg pred but this has made no difference. When I saw my rhemy last week he advised dropping back down as it was making no difference and he gave me a booster steroid injection to see if that would help, which it hasn't, in fact this week I am worse. But I understood the treatment for myopathy was to get the steroids down as soon as you can as long as the underlying condition didn't flare which is why I am really not sure what to do other than to wait to see rhemy on the 25th and explore further. I hope your still doing ok.
I'm sorry to hear increasing hasn't helped as I know how frustrating it is not to have that strength in your legs. Hopefully your Rheumy will have a better suggestion. Perhaps more pred ?
I'm stuck on 9.5mg and may be on this dose for life as I have a pituitary tumour that's affecting adrenals 😔
Sorry to hear that. So hard balancing the effects if pred against the need to take it. I look at my bruises, prem aging skin, BP, cholesterol, blood sugar, moon face and general puffiness ………… desperate to reduce but what can we do. I read stories of others and very aware can always be worse so try to remain positive but there are days.
Take care and hope things stay under control for you 👍
Hope you get atrophy sorted and improve generally 👍
Thank you 🙏
Hi Dad2Cue - Appreciated your feedback & attachments so thank you for that very much Am astonished to see that under " Metabolic & Mitochondrial disorders" a name of disorder Pompe disease (acid maltase deficiency). Was diagnosed 1999 with Maltase deficiency (biopsies of small bowel/jejunum) & been taking digestive enzymes ever since.Have been fighting to get someone to help me with this genetic disorder(autosomal recessive disease) as previous Gastro long retired + now deceased.
He originally thought I was Celiac & was surprised with the results.Rheumie had always known about this condition & didn't think this is connected !!! 
Have never been sure if he is correct in his analysis & have recently revisited my old notes from 1999 as wondered if this disorder is playing part in these a/i issues.
There are 15 known people diagnosed in NZ with this disorder - it is rare & I don't think he knows enough about it.
Printed your links off for appointment Monday for Rheumie to read..
Also been in process of looking for a Geneticist to help me as my complaint is "the late adult onset" - I was in my 40's when 1st diagnosed.
I believe there is probable link there somewhere & will continue to fight to get answers.
Our main hospital in Auckland has turned me down - my GP reapplied again recently as CK levels risen once more......
I just need to keep pushing & be my own best advocate.
Thanks again~
Not what you're looking for?
You may also like...
Flare-up not under control and just don't know what to do
Stomach problems and steroids - where next
On 60 mgs, potassium low, magnesium low, cramps, dizzy, fatigue ,the runs etc...
Advice on Blood test results
ROD HUGHES advice to me
Related Posts
Advice Needed
Weak wobbly legs update number 2 
Getting nowhere... fast
Struggling with work
catch up after private rheumatologist appointmentModeration team
