Morning everyone. Would appreciate opinions/advice. I’ve almost finished a long taper to 5.5mg after 6 years. About a week ago I felt pain in left hip on getting out of bed (an uncomfortable guest bed actually) which wore off quickly when I got moving. Over the week since being home its got gradually worse until this morning it was agony getting out of bed, walking to loo. Its still painful now. Its just like when first diagnosed but only in one hip which is odd. No pain down the leg, no backpain. Very tender pressing into the buttock on that side. I have a telephone appt this afternoon with gp but am tempted to take extra 5mg and not wait for blood test as that could take days to arrange. Can a flare be on just one side? Its disappointing to say the least! Especially as now steroid induced diabetes too. What would you advise? Thank you.
Is this a flare?: Morning everyone. Would... - PMRGCAuk
Is this a flare?
A flare may start on one side and then move across -and the fact you describe it as being same as pre diagnosis, I think you may have your answer. Probably not helped by the change of bed -that may be why it started there.
Before you try extra 5mg maybe try paracetamol or similar to see if that helps. If not, then upping pred would be advisable.
Just for future info - try an avoid tapering just before or during a trip away from home -you are out of normal routine and even little things can upset the apple cart.
Thanks. I didn’t know it could start just one side. It was an unplanned happy family trip but I hear what you’re saying. Next time I’ll suspend the tapper. Thanks again
If you have buttock pain it could be a sacroiliac problem or piriformis syndrome - there are stretches for piriformis that might be worth trying. When I get pain like that I take 800mg ibuprofen (one-off with a meal is usually OK) and sit upright with a hot water bottle over the place where the buttock pain is. That usually helps but it takes time,
And maybe this?
spine-health.com/wellness/e...
Thanks. I did try some piriformis exercises earlier in the week which seemed to make it worse. It does feel just like the hip pain I had originally. Could hardly put weight on it for a while this morning . I’ve taken an extra 5mg about an hour ago and its already feeling better. Don’t know if I’ve done right thing but time will tell. So hard to know.
I would think it is some other muscular muscular problem rather than PMR. Particularly if you were on a strange bed which in my case can easily affect you. Particularly the uncomfortable guest bed variety! You my just bave pulled a muscle as well. I remember walking round France bent double due to a bad bed.
I guess it could be but I’ve already taken 5mg extra an hour ago and its improving. Learning curve. Thank you.
Do you have pain in your groin? Often hip problems are felt in the groin. If you can feel it in your buttock it could be inflammation from your sacroiliac that is causing you pain. Stretches and exercises may be a good starting point, as they help sacroiliac flares but also confirmation from your GP or consultant maybe a good idea first. Hope you get sorted x
No pain in groin. Its really hard to describe - deep in the hip really. GP agreed to increase the pred as flare protocol. Review if no better. Thank you I’ll keep open mind.
Good to discuss with GP or Rheumatologist. When tapering I also had all sorts of niggles and pains that had gone away when I was on higher doses of steroids. Wrists, hip, lower back all the old niggles start coming back! Doesn’t mean it’s PMR, it was just my old self coming back to life! So much so that my hip pain got worse and worse so I have now (6 months after tapering) had my hip replaced!! So the pain was always there but masked by the steroids…
it could be bursitis. I was diagnosed with that three months ago but pain still occurs, not always in same place or side. An appointment with a wonderful hands on private physio is the only thing that stops the pain - can’t take ibruprofen because I’m asthmatic.
Difficult to know isn't it. It sounds very similar to what I have experienced since Feb when I woke up with excruciating hip and buttock pain. Couldn't walk for two weeks when I finally gave in and upped my pred from 6 to 12 mg. Pain went more or less to manageable level and I decreased to 7.5. I had terrible hip pain before diagnosis but was only ever told I had GCA -PMR never mentioned. Anyway GP thinks sciatica and has MRI lined up for me. Says steroids masking it. I don't know but Meanwhile I caught COVID for the first time last week and now feel terrible and due to go away with family on Sat. OH also poorly. Long and short of it I will take plenty of pred and if I'm using it as a painkiller so be it if it means I can walk
If GCA has a component of LVV (large vessel vasculitis) it can lead to hip bursitis and thigh claudication that aren't obviously PMR. They were part of the possibly GCA symptoms I had for a while - but disappeared quite quickly (a couple of months) after 15mg pred.
Thats interesting. Its a complicated group of illness GCA/PMR/LVV and all the variables around it. I think the medical profession mostly underestimate its complexity. I will go back to GP if this doesn’t resolve with the flare protocol. Thanks.
Luckily, a group of PMRGCA-interested doctors are finally saying the same and introducing the "new" concept of it being a spectrum disorder which may catch on soon - Dejaco has said it is for some years. So have I but I'm only a patient so what do I know - but I think that I have sown seeds from pretty early on. I first met Dasgupta about 15 years ago and asked him then in public about the possibility of PMR also being a vascular disorder which it didn't seem to be regarded as then.
Mighty oaks from seeds do grow -as they say. I think you know a lot! There’s hope for the future at last.
I keep chucking thoughts in Sarah Mackie's direction and she has adopted a lot in her own practice. It was obvious from the forum that UTIs are a problem and linked to PMR and to pred - which until she then asked all her patients she hadn't realised. We see links that doctors won't necessarily think of because we hear complaints made by far more patients and notice such trends even if it isn't a scientific as their stuff, It was random comments from GCA patients at a support group meeting that triggered the research into the 8th cranial nerve association with GCA.
Brilliant. It’s great when patients are listened to. I can see how the forum gives you an insight Drs wouldn’t see. You’ve put it to great use.
Sarah does look at it occasionally but doesn't like to too much because this is a patient safe-space to rant if necessary.
You don't give your age, but all sorts of things may have changed during the 6 years of PMR and treatment with steroids. Perhaps there's some new wear & tear in that hip (ie. osteoarthritis)? If there is, perhaps that has become inflamed? Perhaps you've now developed rheumatoid arthritis, too? Has the prednisolone been masking those symptoms?
The key is to try to work out whether the pain is coming from within the joint itself (arthritis)? Or is the pain still coming from the muscles that surround the hip and keep it stable (PMR)? The correct treatment response depends on the answer.
I know what you mean. I’m 68. I did have xrays of hips 6years ago ( to exclude arthritis when diagnosed). No sign of arthritis then but I realise 6 years ago. I will bring it up with GP if I can’t get back to just above where I was. It doesn’t actually feel like bone pain but time will tell. Thanks for your thoughts.
Osteoarthritis due to wear & tear is the least probable. Both PMR and RA are autoimmune disorders, and having one increases the risk of having another.
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