Another question from me. The longer I go on the more confused I get by it all sometimes, so please bear with me.
I was diagnosed in March. Blood tests were 'clear' but definitely PMR. Since I started on steroids I have followed the advice on this forum - exclusively. By that I mean I have not seen my GP since - she said to come back when I am at 5mg - have had no blood tests and have not been referred to a rheumy. A friend of a friend has heard my story and was horrified. As a fellow sufferer, she has bloods done pretty much every week abc sees her rheumy often. Am I right to limit my contact purely to you lovely people or is it time I asked for more?
Thanks as ever.
Debbie.
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DebbieF1603
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I only had initial blood tests at diagnosis. My story is similar. Doctors want me off Pred asap they are not pushing the Rheumatologist to see me. It’s like it’s not important enough? I stick by the forum and try all sorts of guidance offered. If something comes up one of the forum has either experienced something similar or can suggest a way to work with it. If anything serious is worrying you nag the GP till you feel you have got an answer.
Hi Debbie, I organise my own blood tests and nobody seems to complain. I just phone up reception and ask for an appointment with the nurse. If you have PMR you are usually OK in primary care unless something is unusual.
Hi piglette I took your advice about booking my own blood tests when you mentioned it a few months ago. It works well and they don’t seem to mind (or notice). Although I know symptoms are the most important it is nice too see if your numbers are reducing as well. They seem to in my case but not for everyone. Thank you again for the tip.
What do you mean blood tests were clear but definitely PMR.? Do you know what they were? ESR, CRP? and what were the readings?
You don’t necessarily need to be seen by a Rheumy with PMR, unless your situation is complex, or you request a referral. Many GPs are perfectly capable of treating PMR, unfortunately your doesn’t sound as if she is one of them!
Dereliction of duty springs to mind!
Many people have regular blood tests, if only for their own information, and unless you have a very easy journey you should be seen on a fairly regular basis by your GP, especially in the first 6 months.
Personally I wouldn’t worry too much about seeing a Rheumy, but I would ditch the GP! You deserve better.
Certainly you should have tests more often (than basically never) but once a week is definitely overkill. I go every three months. It was a bit more frequent at the beginning, and just lately when I was having some difficulty (yes, I have to admit it was a flare) had tests more often again, but we anticipate it will be three months before the next tests.
And here PMR is managed by GP. It was only ever suggested I see a rheumatologist when it was suspected I had osteoporosis, nothing to do with PMR. I refused because I knew she'd push the meds and it would be a waste of time for both of us. 😈
Thank you all. Very hit and miss, isn't it, what we get by way of 'support?' As I'm feeling ok-ish I will carry on for now but maybe request blood tests soon.
Weekly blood tests is a bit OTT. On the other hand "come back when you have got to 5mg" is downright lazy on the part of your doctor. I would rather have someone who can be bothered...
If you are doing well and it is straightforward then you really don't HAVE to see a rheumy - you will wait forever in the UK anyway, some places far worse than others. But you should get your BP and Hba1c (indicator of potential pred-induced diabetes) checked. If you didn't have raised ESR/CRP before diagnosis (which is what I understand you to mean) then there is little point in them being checked, they'll just tell you to reduce faster or that the PMR has gone away. Neither of which is a good idea/true.
Given the sort of experiences I have heard about in the last 8 years you are probably not too badly off PROVIDING it all goes well. But you do need to have some interest shown - usually they want to weigh you and stuff to see how much weight you have gained on pred!
And before I forget: have you had a dexascan? Have you been given calcium and vit D supplements (and the blood levels checked)? Must be other things...
Hi and thanks for your reply. I have had nothing whatsoever since diagnosis, 7 months ago. Although I've been fairly lucky, with only one flare to date, I would have been in turmoil without this forum. I note that a rheumy is not necessary for now but I will make sure I get an 'update' appt booked at least and try to coax some interest out of my GP.
It occurs to me to say that most practices will insist on a drug review after at most 6 months, especially for a drug like pred. So I'm not sure how she gets away with "come back when you get to 5mg" - though I expect she thinks it will take a couple of months like it does for other uses of pred.
I'd collect my evidence and do some reading for when you DO see her.
Good idea. 7 months in and I'm down from 20-11mg via 9mg which was too low. By my original calculation, without flares, I would not have seen her until I was about 15 months in to 'treatment'.
You are doing really well - it took me about 4 years to get below 10mg so you are pretty well on course! This isn't a race - and you know 9mg was too low. More of the same I'd say!!!!
I had blood tests and repeat prescriptions for the first 8 months after diagnosis, but the first GP I saw didn't mention bones, calcium and vitamin D etc. A chance appointment with a different GP yielded a DEXA scan and blood test for vitamin D. The scan showed I have osteoporosis and my vitamin D level was in my boots! I'm now on calcium, vitamin D and a bisphosphonate drug for my bones!
For some of us, but not all, pred has an effect on bones, so do get it all checked. I'll never know if I had osteoporosis before PMR or whether it developed in those 8 months.
My blood tests are usually 2-monthly and I can see my own results online. As PMRpro says, there are other things they should be looking at as well as inflammatory markers.
I am much the same, certainly regarding my GP. I don't worry about my CRP and ESR levels too much, but I've had Thyroid bloods done and a recent MRI scan - all triggered by extra attention from being part of a Research Project.
If you are feeling ok and doing ok there is probably nothing to be gained. If you've got some niggles, perhaps now is the time to remind them that you exist.
What on earth is her Rheumie expecting to see in weekly bloods?
Does she have GCA or additional complications?
There really isn't much else the poor old docs can pull out of the hat for us, Pred or Pred for most of us.
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Update to 2:00 AM inflammation and new rheumy
IM I DOING THIS RIGHT.🤔
Is it Adrenal Insufficiency 
Is it a flare?
