I have had PMR for three years now and have slowly reduced the pred from 15mg to 4mgs as my consultant advised. Six weeks ago I developed pain in my left thigh and groin which has got steadily worse. The pain is with me night and day, I am limping badly too. Last night at half past one I awoke with the most tremendous pain all over my left leg, it was excruciating and lasted for three hours then subsided and I managed to get some sleep. I have also had pain in my lower left groin, feel exhausted, sometimes shivery and sometime coming out in sweats on my forehead etc. I have had a hip x ray and that is ok. My question is, could this be a flare? I always thought the pai n was bilateral in PMR. I would be devastated if I had to go right up on the mess.
Has anyone advice pleas.
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Patricia10
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Oh you poor thing Patricia, something is definitely going on. Have your doctors put forward any theories at all? Have they suggested other investigations?
I agree that it doesn't sound PMR related, although my first sickening pains were in my groin area. I couldn't get into a bath or out of bed unassisted.
Have you experimented with some extra Pred ? You can get away with it for a few days and then go back to 4 mg. At least you'd know. I'd be camping on my doctor's doorstep.
It would be unusual for a PMR flare to be so unilateral - but not impossible. My immediate thought (once I saw you'd had an x-ray) was hip bursitis but that would only cause the fever signs if it was infected and that is a possibility. Have you checked your temperature?
tells you to see the GP if you have bursitis symptoms together with a fever.
Like SJ - I'd be a fixture in the doctor's waiting room. And another episode like last night would result in a trip to A&E if my GP wouldn't come up with a sensible answer. Pain of that sort is sign there is something wrong.
Sorry to hear about the pain you are in. Both the physical and the emotional pain of these ups and downs take a toll.
I'm glad to hear that your hip is ok. I am waiting to hear about a hip/ pelvis xray I had yesterday. Right side only. My pain is gone in the morning (I do take Pred. at night and maybe that's why my symptoms are lowest in the morning...not sure) or after a rest so I don't think we are dealing with the same thing. I have a hx of sciatic but this feels more sensitive to weight bearing and activity. My markers are the lowest since my Diagnosis in 12/2016. I'm concerned about side effects of AA that I'm taking since Jan 2017. I'm concerned about the total Pred. load I've accumulated since 12/2016. Six months in and only down to 13.5. One restart to 20 because the 15 I started with wasn't working quickly enough per my Rheumy. And one "flair" with markers up and no real symptoms. I still question that second return to 20mg.
Good luck. I hope this sorts out quickly for you and you get some relief.
Raised markers that are not accompanied by symptoms should be monitored - they should never induce a kneejerk reaction of raising the dose. ESR and CRP are not PMR-markers, they are inflammation markers which can be raised due to a cold or chest infection (in particular for CRP). There is a lot of yoyoing by doctors who don't know just how general those markers are.
I suspected that after two weeks of tests going in the wrong direction, and my losing weight "too easily" she overreacted. Also was a concern that perhaps there was something more pernicious going on. I almost argued for restraint, but in the context of other ways in which she had been so accommodating, Rayos for instance, I went along with the RX to my regret at this point.....Live and learn. A new relationship with a Dr.. A learning curve for me.
I can totally sympathise as I started with a similar pain in my groin an thigh at the end of April. I had serious trouble walking (got a taxi across London for the first time in 50 years as I couldn't manage the Tube). It spread down the outside of my leg to my ankle and then came back up the inside to my knee. I had many sleepless nights over the first three weeks before the intense pain subsided (with continued but irregular ones since). There is still a lot of stiffness in my thigh, pain in my knee and ankle and numbness all down my shin. The limp is just about gone but my leg still feels very weak (not helped by 3 hours on my feet in Domodedevo airport in Moscow 2 weeks ago after my BA flight was cancelled with a technical problem as we were about to board and total chaos ensued as the staff worked without any planned process to get most of the passengers on to a later flight that evening and 60 on to one at 5 the next morning - luckily in the first group but could hardly stand by the time I got on the plane)
My first thought when it started was that it might be a flare though I was put off that by it's localisation, upped my Pred (people on the forum already thought I was coming down too fast) but to no effect and so went back to where I had been before. In the end the general consensus at my surgery (still getting to grips with understanding PMR/GCA but working hard at it) was that I had done something around my Sacroiliac joint which had affected the Sciatic nerve which was then causing the pain and numbness. Chiropracter said my pelvis was all over the place and has spent several weeks getting it in to more stable alignment (along with some exercises) and I now seem to be making progress back to normal though not nearly so quickly as I would like. Might be something to consider
I'm sitting in the Osteopathic waiting room as I read your reply. I wonder about the pelvis all over the place......That's how I'm feeling about lots of my skeleton . Pred?
My identical pain is in my right hip joint and thigh, right knee and halfway down to the middle of the lower leg muscle. It never stops and hurts like hell. Diagnosed as OI in the right hip joint. There are big changes there BUT the hip joint seems to be improving somewhat so although the OI is there, the pain could be PMR related.
Guesswork which is aboutbwhat the doc does in a 10 minute interview!
Forgot, I am unable to walk unaided at home and at all outside. I have disability scooters to get me around.
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