Some of you may remember I have been waiting for the x-ray results of my hip. I saw the rheumatolgy nurse specialist yesterday and she was able to access the results on her computer! It shows nothing significant that would cause the pain I am in so the rheumatologist is arranging for me to have an MRI scan. Another waiting game I'm afraid.
I am now concerned that it could be osteonecrosis, one of the causes of which can be long term steroid use. Does seven months count as long term do you think? I am wondering if I should try and taper my pred a bit quicker. I have been reducing from 10 mg to 9.5 mg over a month with 2 weeks to go. Maybe I should make that 9 mg for the next 2 weeks. ( I am using Dorset Ladies plan).
I know I am panicking a bit but the type of pain I am experiencing fits the symptoms of Osteonecrosis and when they move my hip joins around in examination I have no pain, just fairly bad to really bad pain when I walk.
Does anyone have oteonecrosis? How did you manage it?
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Omanain
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I had very bad hip pain and it turned out to have been caused by referred pain from my spine. As for how quickly osteonecrosis can develop it can happen very quickly, even as little as six months, but it is a very rare side effect. It's really good that your doctor is taking your symptoms seriously and I hope things resolve quickly and positively for you.
Oh dear poor you! It’s a dreadful waiting game. In the early days of PMRI had terrible groin pain which made walking difficult, climbing and high stepping impossible. If I am in danger of a flare, that’s my warning pain. It’s nothing like that is it?
My hip really started to hurt when I reduced to 2mg Pred then came off it. It was either masking the pain or the Pred caused further deterioration? My X-Ray showed moderate bone damage. The pain was unbearable though. I couldn’t walk without crutches by the time I was referred to a surgeon. It didn’t change even when I had to start steroids again. Most of the pain was in my groin. I then got Sciatica that caused hip and buttock pain. To me I couldn’t read the X-Ray? Just a few dark shadows where the damage was. MRI scans are much more conclusive. I have had arthritis though for 25 years and managed it well till PMR in 2016. But I am also that much older too and gained a fair bit of weight since then. Good news is I have a new hip. Don’t know if this helps but be persistent no one in this day and age should live in constant pain. 😉 Good luck.
The chances of you having osteonecrosis is very, very small. I am sure a lot of symptoms fit osteonecrosis but it does not mean that is what you have, Dr Google is not always that clear. The MRI should show up things though. Carry on with steroids as normal, don’t try and reduce too quickly or you will have a flare to deal with as well.
I had a MRI of my lumbar and cervical spine last week. My hip and shoulder/neck pain according to the GP is from my back. My Rheumy says it is a combo of the PMR/GCA, spondolysis and severe disk disease. As I am coming down on my prednisone the pain is getting worse. Probably because the prednisone helps with the inflammation in my spine.
Yes, I too have the same back problems, my Dr. Says Prednisone won’t help the back pain, but if it’s inflammation, yes it will. The increase from 5 to 10 after a over done vacation proved it helped with pain so I could move without so much pain!!
The proof of THAT pudding is literally in the eating: does pred improve your pain? If it does - your doctor is effectively calling you a liar. And I wouldn't stand for that - nor take it sitting down
Have either of you investigated myofascial pain syndrome? I have a lot of hip/back pain with my PMR that is purely muscular (caused by the same inflammatory substances) and which doesn't show on any form of imaging. It requires clinical skills which these days are seriously lacking. I'm waiting for a Pain Clinic appointment - my wonder doc left 5 years ago and I've been really good until about a year ago. I'm hoping there is a replacement at the hospital who is as good but if there isn't I shall consider visiting her privately. Myofascial release was a revelation. Bowen therapy from a really good practitioner also helped me a lot - here they are a bit arty-farty...
My MRI revealed so many back problems that if I were to undergo the three tired surgery I would have so much hardwesr in my back I wouldn’t be able to move, and if I tried it would be very painful. So I will weather the storm with both PMR, and my back.
I do go to a therapist every week, she gets the knots out if I have them, then tapes my back, which helps keeps me supported to walk better. I take a pain pill, late a.m., then one before bedtime, (Tylenol with codine).
Sometimes I get so tired just trying to figure out what road is the best, if I totally go with the guality of life, and the live for years and years, is my body going to be worth a damn, and am I going to be crazy with pain!! If only I could see the future😎
Perhaps it is just as well we can't. But isn't quality of life for as long as possible the aim? You can say no now - and still live a long time with a lot of pain.
A couple of months ago I had severe pain just above my right buttock after having had pain around my right hip and groin and down the front and inside of my thigh when I walked which had restricted my walking for months before that. I had had an X-ray which showed that I didn't have Osteoarthritis. Instructed by my GP, I went to the physiotherapy department of our hospital and could hardly stand up let alone walk after waiting for an hour. Nothing was diagnosed there and I was given some exercises to do and a walking stick. I was told I'd get an urgent appointment in two or three weeks time!!! So I went to an Osteopath who immediately diagnosed femoral nerve compression and released the nerve from between my lumber vertebrae. He was also horrified about the exercises they gave me to do as he said they would have made the problem worse. I have had five treatments from him and now have no more hip pain and only a little tenderness in my right groin and thigh when I walk too far. Trapped nerves can really cause severe pain and the pain can travel to all sorts of unexpected places. Maybe don't rule this possibility out. I'm on my way down to 4 mg Pred. after 2 years of PMR and I think the higher doses might have disguised the problem. Hope your pain is resolved soon.
Thank you all for your input and advice. Unfortunately I am not financially able to try some of the therapies but our local osteopath has a very good reputation. Up until now I have been reluctant to go because I too have had 3 lots of surgery on my spine and I am a bit wary. A physio I was seeing for neck pain once said she would love to have a go on my back, but she might make it worse. I asked her if she meant worse before it was better, but she said "No,just worse"!
I could see the osteopath and just ask for his opinion but maybe I should just wait until I get the MRI scan results.
I am sorry life looks so bleak for you at the moment lafontainepam, and I am sorry I can't think on anything useful to say to you except that you have my best wishes as have you all.
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