I have had GCA for just over 2 years and doing nicely with reductions. I didn't put on weight nor did I develop a moon face. Had lots of other side effects but they have gradually disappeared. Just two flares. I only knew about the last one because my ESR was slowly creeping up. In January I was down to 2mg. However, my ESR (which had been holding at 5) was going up and the last reading was 25. Not very high but definitely going the wrong way. The only symptom I had was a wee niggle in my right shoulder. I have increased to 5mg and my latest ESR is 9 so much better. Unfortunately, the shoulder isn't much better. And now besides the right shoulder issue, my left hip is quite sore. My doctor is thinking PMR and I am staying on 5mg for another 3 weeks and will get ESR checked to see if it is holding at 9 or has dropped even lower. I know very little about PMR but thought that everything was bi lateral. Does anyone have any PMR experience of only having pain or discomfort on one side. I have no other health issues, am not overweight and am quite fit.
Thanks
Written by
allykat
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It generally is bilateral - but that doesn't mean it isn't unbalanced or that one shoulder/hip starts first before anything else joins in. You are already on pred so that will probably have managed the milder stuff until now and it is only just getting to the stage where the inflammation is mounting up to the level of causing symptoms. I think a lot of people who are finally dx'd with PMR on the bilateral criteria could look back and say it started in one shoulder and then crept up in other places. And actually - I bet there are a lot of people with unilateral problems who are told it is frozen shoulder (a common previous label) and "your age dear" and never get to the PMR fold.
Thanks for your reply. As much as I want to say that PMR isn't on my agenda, I think you could be right. My GP and I have a great rapport and we will see what happens over the next few weeks. I am very watchful of other signs, e.g. sore jaw and headache which is how it all started 2 years ago, but so far nothing other than shoulder and hip issues. I just want to be done with all this and get on with my life!
Don't we all - but I find I am able to get on with my life very well on a moderate dose of pred, 6/7mg at present. It rarely stops me doing things that most people my age are doing. Not that many on their mid-60s still ski which I have now given up, but it wasn't really PMR or pred that brought about the decision.
A simple blood test will give you some great information. Studies indicate increases in any one of, or combination of, the following: [complement, ceruloplasmin, erythrocyte sedimentation rate (ESR), C-reactive protein (CRP), ferritin, haptoglobin, fibrinogen, alpha-1 antitrypsin and amyloid A] or decreases (albumin, transferrin, and transthyretin).
The "SED test" and "C-reactive protein" are both blood tests that helped diagnose my dad. Best wishes.
Not in everyone sadly - the only thing I have ever had raised is ferritin. ESR and CRP stubbornly low normal - as is the case for about 1 in 5 patients with PMR/GCA.
Hi allykat,
Yes, my PMR started with pain in right shoulder and it gradually got worse over two to three weeks. Eventually I went to see my doctor who said it was a rotator cuff injury. The advice was to get some physiotherapy which should sort it out.
I had a months and physio which didn’t sort it out I could not sleep due to the pain. So to cut a long story short, I managed to see a shoulder consultant by going privately. (On NHS I would have to wait up to 18 weeks, so my doctor said).
The consultant gave me an injection in the shoulder and I paid the hospital bill of £150. The pain quickly went away but about a week later the pain was back. Also other symptoms were developing and I could not lift my legs high enough to get out of my car and could not turn my neck around to look sideways. Pain was also starting in the left shoulder. I was beginning to get pains around my saddle area as well. To cut the story short, PMR was then suspected. A blood test also confirmed inflammation and most likely due to PMR.
So again, to cut a long story short I started on 15mg prednisolone and my PMR journey started.
I hope you get sorted soon because as you know this is not a pleasant condition
Hi Pete and thanks for your reply. That sounds very much like what is happening although at the moment they are more niggles than terrible discomfort. I suppose my current dose of 5 mg is helping and things do improve somewhat during the day. I am one of the lucky ones in that my ESR dose reflect what's going on. Having started out at 50 mg, I know I will get through this and if it means increasing to 15 mg then so be it.
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I could not sleep due to the pain. So to cut a long story short, I managed to see a shoulder consultant by going privately. (On NHS I would have to wait up to 18 weeks, so my doctor said). 
but about a week later the pain was back. Also other symptoms were developing and I could not lift my legs high enough to get out of my car and could not turn my neck around to look sideways. Pain was also starting in the left shoulder. I was beginning to get pains around my saddle area as well. To cut the story short, PMR was then suspected. A blood test also confirmed inflammation and most likely due to PMR. 
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