I have posted a few times in the past. Everyone has been so helpful and knowledgable. So , here we go. Diagnosed with PMR in February 2020, and GCA a few months later. At which point I was put on 60mg prednisone. Thank goodness that the GCA was diagnosed early and I have no vision damage. Gradually reduced the Prednisone and actually got down to 2 mg. several times. Am currently on 4 mg. as well as Kevzara injections and methotrexate. I am having hip pain and thigh pain that actually affects my gait. Does not feel like the PMR hip and back pain that I have had from the beginning. My Rheumy says he doesn't know what else to do. So he said to stay on 4 mg for now without tapering until I see him again in 4 months. That does not help with this new issue. Read an article about steroid induced myopathy and was wondering if anyone else has experienced this issue. Thanks for all the support you give to all of us who are going through this unpredictable disorder.
Steroid induced myopathy? : I have posted a few... - PMRGCAuk
Steroid induced myopathy?
Both hips and thighs, or just one side?
Maybe well be sciatica or osteoarthritis or a number of different things… have you tried Tylenol or similar pain killer?
I have had sciatica for most of my adult life. It is not sciatica. And it's both hips and thighs. Like a soreness and a heaviness . Not like anything else I have felt during this journey.
Ok - just a thought
I have taken anti- inflammatories like Tylenol and ibuprofen...they do not help at all. Was really just curious if anyone had experienced anything like it and if so what did you do to alleviate it.Thanks
Tylenol is notvan anti inflammatory and while on prednisone was told couldnt take any anti iflammatorys, and only able to take tylenol which does not even affect pain
Tylenol is paracetamol not a NSAID [non steroidal anti inflammatory drug] like ibuprofen..
I seem to be asking everyone this a lot lately .When did you last gave a Ferritin/ Iron , Vitamin B12 , Folate and Vitamin D test?
If it has not been in the last few months it will be worth getting these done to rule out vitamin deficiency and anaemias which can cause these sorts of pain and change in gait ( it did for me!). It can also cause neuropathy.
Make sure you stop any vitamin supplements for 4 days or at best a week before the blood tests and drink enough beforehand to get accurate results.
Get copies of your results don't just rely on the GP stating they are normal as very low or borderline results still mean you could have Insufficiency issues and that also causes many symptoms. I which case you would still require diet changes or supplements to help prevent the risk of it getting lower and to help improve your current symptoms.
Long term steroids , MTX , Biologic therapy, PPIs, antacids, statins , pain killers and certain antidepressants and nerve pain medications can reduce how well you absorb B vitamins . Low B Vitamins can affect how well you absorb iron, calcium and vitamin D. The effect can take months or years to slowly cause the deficiency with symptoms slowly getting steadily worse. It's why they should test these things every twelve months while you are on these medications even if you take supplements and have a good diet.
Getting a Dexa scan might also be advisable.
Yes , it's possible to get steroid induced myopathy but it's always a good idea to rule out these simply treated but often extremely symptomatic nutrient deficiency problems first. Often both Consultants and GPs don't consider doing these tests and don't realise how much nutrient Deficiencies can be the cause of their patients ongoing symptoms.
Steroid induced myopathy is seen more often when you are on long term high dose therapy, but it's less likely to come on at low doses if you did not suffer with it earlier in your treatment , although it can happen and sometimes the onset is rapid.
Let us know what you discover and I hope it improves soon , Bee
My iron, Vit. D and B are all good. I also take folic acid as well. This came on about the time that I bumped up my prednisone to 10 mg. Nit sure if that is related. But at 4mg I still have it. Thanks for the info and the reply.
It could be possible that a rapid change in steroids could have triggered some sort of rapid change.It's the change in gait that sounds unusual though.
It sounds like something different to me , what though? No idea.
Hip and thigh pain? My fIrst thought is trochanteric bursitis - not least because mine is currently playing up!!!
I had steroid myopathy (amongst other unpleasant pred effects) when I was on methyl prednisolone for a few months - never been a problem with prednisone or prednisolone. It didn't hurt as such, not so that I could locate it to a specific place.
my.clevelandclinic.org/heal...
The bit in the description mentioning swelling is misleading - I've never felt any swelling externally. So too is the "it goes away" part - for us it tends to be part of the PMR and the PMR "feeds" the inflammation.
For something to try in the meantime, icing the area may help reduce the inflammation and there are stretches - I find the clamshell helps. So does the piriformis stretch.
myhealth.alberta.ca/Health/...
But it is worth asking your doctor.
I di ask my doctor and he said most likely PMR related. It just feels different than what I have experienced over the 5 years on this journey.
It probably is related but yes, it is different from ordinary PMR stiffness. Does the description in the link fit?
So, I decided to increase my prednisone to 10mg to see if the hip and lower back pain would subside. After just 2 days , I can't believe the difference. I can actually walk normal again. I want so badly to get off the prednisone. Side effects have been so bad... osteoporosis, high blood sugar and gastrointestinal issues. Not to mention hair loss and bruises anytime I bump into anything(which I am very prone to do!). How long would you say I need to stay on this dose before I start tapering? And what method of slow tapering do you think works best? You all have been such a great source of information and comfort. I cannot thank you enough.❤🙏
Yup - that's what happened to me. The difference in the feeling is unbelievable isn't it?
Everyone wants to get off the pred - except maybe me, I'll take a relatively pain-free existence over stopping pred any day! I can't get under 7mg without being on Actemra injections - I have both for the foreseeable future I hope - if I return to the UK that will be another fight.
Osteoporosis won't just get better off pred and it is possible you had low bone density before pred anyway - many do. BS can be managed one way or another. Are you sure the GI is pred? Are you on a PPI started at the same time? Hair loss can be the PMR too - mine fell out a lot during the PMR-no-pred days. But it is always pred that gets the blame! It will get better - I have an awful lot of hair now, it all came back. Curly ...
I would treat it as the flare protocol - up to 2 weeks on the higher dose and drop back to just above where you had trouble. And see how you do there. And do the stretches like a good girl!!! The local rehab doc says there is no getting out of doing them if you want a good result.
You can stay on increased dose for up to 14 days without impacting on dropping back down to just above previous dose . my usual advice in the flare protocol is 7-10 day to clear out existing inflammation.
You might want to be off Pred... but so long as your PMR is around, you have to manage side effects.. and all can be, some easier than others admittedly..
Preferred slow tapers are here - tried and tested - choose which suits you -
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
Hello DL and Pro, a quick question related to the flare protocol. I flared at 13 mg, upped it to 18 mg for 13 days and now back to 14 mg the last 3 days (where I felt good, as is recommended). How long do I stay at 14 mg before I try 13 mg again? Thanks!
Be sure you are really OK at the 14mg - 13mg wasn't enough before, it may be too soon for that yet. Half a mg and very gingerly to start with and then no rush for the next 1/2mg either.
Ok, thanks..yes, I was doing "ok" at 13 mg for about 2 weeks..but then the neck started up again (bearable, but there) and had one night of the side/rib pain that I hadn't had in many, many months. I wanted to nip it in the bud, so to speak, so went up to 18 mg pretty quickly.
I was under an extreme amount of stress . Husband was ill, we finally found out what it was after much testing and he is doing much better now..and because of that illness he had to leave his job, so we were facing a possible move/selling the house. He has recently found a much better one..thank goodness. I also have a torn rotator cuff, and the stress of deciding to have surgery or not is there, too. AND I had to resign my position at the hospital after months of physical therapy and not enough improvement to go back to work using my arm/shoulder - I loved that job..so that was a stressor, too.
Ironically, I felt ok PMR-wise during the stressful 5 weeks, but then after the stressor was eliminated it started up!
Thank you for the reply!
That is the typical sign of the new dose being too low, the inflammation builds up until symptoms are felt. The stress is a very likely reason so I'd wait until you are well out of the woods with all that lot!!!
"He's found a much better one" - sometimes good things come out of apparently bad ones. Could you not have sought retiral on medical grounds?
2-4 weeks -and agree with PMRpro-smaller reductions in future.
Ok, thank you!
Just seen your reply to DL - BOTH sides? Yes, when mine started up a couple of weeks ago it was both sides, deep in the groin, for a few days, and a different feeling from the usual. A bit extra pred seemed to sort it and then I walked more than usual, and now it has localised to right hip and down the outside of my thigh.
I don't have any swelling and it does not come and go...it is constant. I don't think I put that in my comments.
My trochantric bursitis left side is also playing up but this time I have nipped it in the bud by not walking round the patio ( 80 steps each circuit) up to 20 circuits , using ibuprofen gel and sitting on my recliner chair reading my Michael Connelly books. Not much fun is it! At least this time I have learnt.Take care.x
But my walking is necessary - I live alone!!!!
I too live alone with my little whippet, luckily I have two brilliant friends who take her out every day. I have my delivery from Waitrose each week and now have meals delivered from Wiltshire Farm foods, by late afternoon I am absolutely shattered, balance not good and don’t feel as safe. I am now on 7. 05 mgs of Pred, I don’t know if this is normal at this dose, I just hope things improve. I look at myself and ask how have I got to this, I tell Cassie we are two old crocks together. I try and brush it off but it does upset me. Take care and keep safe, we would be so lost without you. X
There is no chance of delivery of shopping here! You can buy a few things online but at a price!!!
Do you use a walker? I had awful back pain and it was so bad I actually got one to be able to carry shopping on it. Then things improved and I don't need it at present - might one day though!
Thank you for your reply, I have a Rollator that I use especially outside and when I am wobbly around the house. When I use it my right shoulder gets very painful, I thought it was just rotator cuffs on both shoulders but my right shoulder became very swollen as if I had been lifting weights. On X-ray they found I had a partial dislocated right shoulder probably caused by one of my falls. I have an appointment at the Fracture clinic on 9th October so I will see what they say. I try to use my walking stick with a rubber disk when I walk around the house. Could my Pred 7.5mgs be the cause of my wobbles, and if so will this improve, it is much worse when I am tired.x
Honestly don't know - have you been referred to a Falls Clinic? Also an important source of advice and help.
Good morning PMR PRO no I have not been to a falls clinic, it is difficult with my daughters working full time in their own businesses to take me to appointments. I am going to the Fracture clinic with someone from the care agency that helps me have a shower, but is very expensive, so have to prioritise appointments x
Once upon a time you would have got Patient Transport to get to a hospital appointment. Does that no longer happen at all? Speak to your GP. There are also volunteer drivers who will take you to appointments too.
Ditto to PMRpro’s comments re drivers ..
it’s not very encouraging when your rheumatologist just shrugs his shoulders. How about X-rays, referral to a hip specialist, assessment by a physio, referral to pain management? It’s not always PMR. My hip pain is bursitis and an gluteal muscle tear, and last year it was avascular necrosis of the head of the femur. I hope you find a cause and relief. I know how debilitating it can be.
I have exactly what you describe, although just in my quads (front of thighs). Feels sore and quad muscles feel weak, but different from the PMR stiffness I experienced prior to diagnosis and treatment. It doesn’t ever really go away regardless if I exercise (walk, golf, pickleball, deep water exercises), or if I rest and am inactive. Tylenol and Voltarin don’t make a difference. It effects both sides but doesn’t effect my gate, rather my ability to go upstairs.
First noticed it while on 5.5mg pred after coming home from sunny holiday last Feb. saw my rheumy in June (face to face) and after examining me she said it was steroid induced myopathy. She mentioned that the upper (largest) muscles in the legs (and hips) are often the area where myopathy (weakness) occurs first and over time (long-term) pred and PMR can result in muscle loss. Lowering steroids may help as does continual use of those muscles as to avoid muscle wasting and weakness.
Of note I’ve had PMR for almost 7 years, been on pred 6.5 years and Methotrexate almost 3 years. Currently on 5mg pred and 15mg MTX injected weekly. I’ve just started a job after first retiring at age 55 due to a workplace injury (complex PTSD), and PMR symptoms emerged 18 days later. My new job is not physically taxing at all, but I can’t imagine trying to taper my medications while working, so I’ll be asking for guidance at my next phone appt with my rheumy in Dec. She’s been pleased with my tapering progress albeit slow and encourages me to set realistic goals. Perhaps I will lower my MTX injection to 10mg or space them out longer?? When I stopped it for 3 weeks one time, all the familiar PMR symptoms returned.
Lowering my pred dose may help with the myopathy, but at this dose it takes doubling my 7-week taper to 14 weeks just to drop .5mg (and even then it means contending with the dreaded adrenal insufficiency symptoms). I do need to work (and enjoy this low-key, part-time position), so it presents a bit of a quandary.
Sorry for the lengthy response. I do hope you get some relief, perhaps from tapering the pred very slowly seeing that you’ve made it to a lower dose previously. It’s frustrating when the solution is to lower pred when some of us can get stuck at a dose, or flare when tapering at lower doses. Or when the suggestion is to keep physically active as to strengthen weak/wasting muscle when doing so is difficult to begin with given they are already weak.
I’ve been advised to do more weight bearing exercise after my last bone scan, however pre-existing OA in both knees combined with myopathy in my thighs hinders doing so. I just try to incorporate what I can in a slow, consistent manner.
I have had bilateral weak, painful legs for 16 years, diagnosed with PMR 10 years ago and still on prednisone. Many doctors and specialists over the years blamed the leg issues on PMR. I have never agreed.
CT and MRI scans have revealed lumbar spinal compression with no apparent nerve compression.
There is osteoarthritis in my back, shoulders, thumbs, knees and feet. Regular, slow release Tylenol helps keep the arthritic pain under control.
Bilateral trochanteric hip bursitis pops up on occasion which is usually dealt with using ice, ibuprofen and exercise.
In May of this year, I finally got to see a rheumatologist and was sent for a battery of blood tests, x-rays and most importantly a PET scan. All of which revealed PMR is in remission (something I suspected for about a year), no neurological issues and no myositis.
Even after all these tests, I have no answers to the long standing leg bilateral leg issues.
An orthopedic surgeon whom I was seeing on a separate issue indicated that the bilateral nature of the symptoms, and previous x-rays and scans indicate the problem is most likely spinal.
I’ve laid this all out to show what a complicated problem many of us share regarding bilateral painful and weak legs.
" All of which revealed PMR is in remission (something I suspected for about a year)"
But you are still on pred - so it is medication-induced remission, Lower the pred and it still could reappear. It MIGHT not, but you can't tell.
Yes, I suspect as much. The rheumy is suspicious of other things revealing themselves as well, including GCA and rheumatoid arthritis, among other things. After all these years I guess the pred could be hiding all sorts of surprises. It's all a bit scary, but I'll give it a go.
Sounds to me like if you increased the Pred and things improved you might now have PMR following on from GCA. It does sometimes happen unfortunately.
Poster was diagnosed in 2020 with PMR, and then later with GCA.. so my guess PMR there all along, but masked by GCA doses.. now has popped it’s head above the parapet again [even though GCA may be in remission].
Thanks I missed that bit, I should have gone to Specsavers. I suspect you're spot on
😊
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