So pleased to have found this forum. Was diagnosed with GCA in July, quite quickly, and started on 40mg pred right away. Had all the classic symptoms and sight went in one eye so a no brainerr really. Still thanks to my GP as when I phoned NHS 24 with a list of my symptoms, my suspicions it was GCA and alerted them to the fact that this could be a medical emergency I was told that this was unlikely and to wait three days until my surgery opened after a long weekend local holiday. Temporal artery biopsy confirmed diagnosis. Got given Omeprazole and Alendronic Acid. Symptoms disappeared very quickly. Have had Fibromyalgia for years and this was the best I'd felt in a long, long time. Then 10 days ago I experienced a sudden onset of intense pain in my left hip and thigh which is muscular rather than joint pain. No previous history of pain there. Have to use a stick and each step is excruciating. Doesn't sound like PMR to me as only left side and shoulders are fine. Pain there all day and all night. Have been on holiday but when home tomorrow plan to be first in queue at docs on Tuesday morning. Could it be a reaction to the steroids? Could it be a reaction to the Alendronic Acid? Could it just be a flare up of Fibromyalgia? Could it be the start of PMR? The consultant said there was a slight chance of something like necrosis (I think) but that would cause pain in the groin as well as hip.
Has anybody been here before? Would really welcome any advice or pointers. Thank you
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GrannyReid
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Difficult to say - it could any one of a range of things. Sorry to not be any help!
Are you sure it is muscular? Could it be trochanteric bursitis? Or is it after walking it happens? Then it could be claudication from GCA. Or have you low back discomfort? Is it along the sciatic nerve? That could be myofascial pain syndrome or piriformis syndrome.
By the way - I would file a complaint against NHS 24. Yorkshire Ambulance paramedics are taught to recognise potential GCA but that isn't much use if the call centre doesn't know about it! Anyone who said that to a person with transient sight loss needs retraining. Amaurosis fugax is not only a sign of GCA - it is a common symptom of stroke. Leaving THAT for 3 days would be medical negligence.
Thank you for your reply. On the contrary, you have been very helpful. Left lower back also sore and now my left knee has joined in. Pain is not just after walking but unremitting and unrelentless 24/7. Dreading train journey from London to Dundee tomorrow. You have given me some new medical terminology to google. Did file a complaint about response of NHS 24 in Scotland. No response. Feel better just knowing there is moral support out there. Thank you.
As PMRPro says could be many things, but the trochanteric bursitis sounds horribly familiar - I have it at the moment and yes, it is excruciatingly painful. Mine's nothing to do with GCA, as that's been in remission for sometime, but due to the fact that my other knee is arthritic and I haven't been walking correctly for some time! So I've thrown my gait into disarray!
If it is TB you might find heat helps it, you obviously can't take ibruprofen tablets which are recommended, but maybe could use the gel sparingly. Also try ice (10mins) to reduce the inflammation, and if you can bear it get a tennis ball and massage the hip and thigh where it hurts most - that helps release the tensed muscles.
When you see a doctor, ask for a steroid injection, he may also recommend physio or masseur!
Thank you so much for your reply. I've never heard of the trochanteric bursitis before; I think that you might just have put your finger on it. Have osteoarthritis in other hip and knee so maybe there is a link there. Thank you for all your suggestions. I hope we both get some relief soon.
Mine is improving slightly, thanks to lovely sports masseur. Trouble is I still have arthritis in other knee, so even if TB clears up I'm wondering whether I'll get it again - but I am finally in the system to see about knee - so maybe it will be perfect somewhen?.....
Thanks again. I am now convinced it is trochanteric bursitis as describes my symptoms at the moment to a T. Would have thought the 25mg of pred I'm on would have helped but pain couldn't be much worse. Hope you continue to make progress and thank you so much for taking the time to read and reply to my post.
Just been to doctor's. Confirmed trochanteric bursitis. Am from Dundee. Attended my first support meeting last Tuesday. Very well organised, very informative; will certainly be a regular. You are a fount of information - what a wonderful forum this is. Thank you so much.
I had something like that happen to me several months ago, made walking difficult. Was sent for xrays for fear of necrosis but they found nothing. Am on Pred and Fosamax. Started core strengthening exercises and squats and it improved, just went away. Not saying yours is the same thing, but just saying that for me it wasn't necrosis and that it responded to physical therapy.
Thank you very much for your input. Am already on 25mg pred so surprised pain from trochanteric bursitis (just confirmed this afternoon) is so bad. Have been given codeine phosphate to take with paracetamol and gel to rub in. Advised to rest for at least a week. Will see how it goes. No mention of X-rays or physio at the moment. Thanks again.
The bursae don't have a brilliant blood supply - which is how the oral pred gets there. That's why injections are so much better as they are directed at the area that needs it, not the whole body. It probably WILL improve - but it was months for me.
It is commonly part of PMR so is being fed by the daily dose of inflammatory substances shed in the body each morning - it isn't the usual cause of over-use. Rest may help but I am sceptical.
That is very interesting. I will be armed with all this info on my next visit to doctor's. Thank you again for your very welcome and informative input.
Thank you. Have to go back after complete rest. Physio to be sorted out then. Feeling so much more positive after all the support found here. Much appreciated.
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