I had a lot of blood teats done last week and my doctor phoned yesterday afternoon with the results. She told me that most of the tests were normal. My calcium levels were really good, my CRP was 27, which she considers to be normal and my white blood cell count was on the high side. When I pointed out once again that my 'normal' CRP was around the 7-8 mark she once again said that it being raised was nothing to do with PMR. Surely as well, a raised white blood cell count indicates inflamation in the body? I certainly don't have a cold or cough or anything like that.
Then the dreaded question came - 'How much steroid are you taking now?' When I replied that I had raised it to 15 mg as I was in pain and very stiff in the mornings and that it had relieved that, she said that I shouldn't have done that and that taking extra wouldn't cure anything. (Didn't think it would cure!) She was nagging and saying that soon I would be wanting more and more and that I would get into a spiral of taking higher and higher doses. Didn't think steroids were addictive! I said that it was my intention to start to gradually reduce again. She kept saying that 15 mg was 'a massive dose'. She didn't give me a chance to say that if the inflamation wasn't kept in check and GCA was 'activated' that I would be on an even higher amount.
She then went on to nag me about the fact that I have always refused to take AA, as I have a lifetime history of stomach problems. She said my bones were in grave danger of fracture. Didn't she say earlier that my calcium levels were really good? - I thought we took Calcichew with vit D and had extra yogurt to help with our bone strength!
Luckily the plumber, who I had waited for for several days, arrived, the dog was going nuts so had to end the call. I think I might have said something I might have regretted had he not turned up!
Well thanks for listening, at least you all understand! A good day to you all. DL
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Dobermanlover
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Thank you both for your replies - have asked for a DEXA scan, but they are not forthcoming round our area, so will just have to trust to luck.
And yes, the plumber was, as always, very helpful. It's why we're prepared to wait for him!
Don't know how lucky I will be in changing doctors - the one in our practice who diagnosed the PMR in the first place told me to take 15 mg of Pred. for 2 weeks, 10 mg for 2 weeks, 5 mg for 2 weeks then hey presto! Hmm... Another one upped it to 30 mg as 15 hadn't worked very well. I think there are another couple of doctors there - maybe try one next time.
When I was at my very worst and in the most pain I was at 30. So relative. Thank goodness the plumber came so you could end that annoying phone call. Who ever in their right minds wants to take ever increasing amounts of pred
"she once again said that it being raised was nothing to do with PMR"
All I can say is: you need a doctor who knows the facts and, apparently, this one doesn't! And having read the rest - well, that just confirms my opinion.
I fully get why you felt you needed a rant!!!! Nothing to what i would have done...
Where are you? There are a few palces that do dexas for affordable rates if you can afford it.
Sorry PMR pro - have only just seen your post - I live in SE Cornwall. Not many big hospitals locally, just Derriford and Truro and don't know if they do Dexa scans there. DL
What about Exeter? You need a good Rheumie before they wreck your health completely. I'd travel if I could Doberman lover ( I have resisted all the who let the dogs out jokes, I'm improving) In fact I do, I go from Sheffield to Leeds to see Sarah Mackie - not a convenient journey. I hardly see the GPs unless it is a really easy thing like a prescription and my hysteria is managed entirely by this forum.
One lady travelled from Kent to see Sarah - and she was the one who worked out what it was, not PMR but ankylosing spondylitis which responds to different drugs.
As I said to PMRpro, will try the Exeter link she has given me - like you, my hysteria is managed here, what would we do without it? The good people are here through all our frustrations and dark times, giving us informed and sympathetic advice. DL
Wow someone als singing from my Hymn sheet , seems the worst thing about pmr/GCA is battling with the bloody doctors 😤🤷🏽♂️ Always thought ours Doctors as our best friend,Not our flaming JAILERS 😵💫😱
Or are we just pred windjores (WICS) 😢 I don’t think so
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