Good evening all and thank you once again for all the advice I have received for you all reference my PMR .
I went to my DR to day to ask if I could have a referral letter to go private to have a dexascan he said it would be of no help at this stage what ever he meant by that 🤔I stated it might be of help to me and on request again he give me the referral letter, I am having the scan next Wednesday 10th. While I was there the DR requested me to have a;
B12 injection
antinuclear antibodies blood test
+
These other blood tests below, when I asked what they were for he said it’s just a full blood count. Can anyone tell me what they are and what I need to have these tests for 🙏🤞
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Maggie1313
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Why won’t the DEXA be useful?? Yes, it is 3 months after starting Pred but better than nothing and one doc told me it takes about three months for bone effects to show up, so still a useful baseline. Anyway, well done for being persistent; it’s not like they are paying for it. Anyway
U&E is urea and electrolytes which is a good look at the kidneys and potassium and sodium levels (the electrolytes).
LFT - liver function test
Full blood count - white cells (fight infection) red cells (carrying oxygen) and platelets (clotting)
ESR - Erythrocyte sedimentation rate ie the rate at which red blood cells sink in a sample which give a guide to levels of inflammation of any sort not just PMR.
CRP - A protein released by the liver in response to tissue injury or inflammation.
This a very good website to get good info on tests and you can type any test in the search box . Worth keeping to one side.
O my goodness thank you so much for your minefield of knowledge. Would it not have made it a lot easier for him to take the time to explain and not left me feeling there was no point in explaining as if I wouldn’t understand.
After 16 months of being on high dose steroids (13mgs up and down from that dosage.) This was basically due to mismanagement from my GP who was too keen to push for the lower dose of prednisone which resulted in relapse after relapse. I too suggested to my GP I that should have a DEXA scan. He deemed it unnecessary as my blood count for calcium was within normal range. I was not satisfied with his management and decided a week later to pay privately for a scan. The results were horrendous. I have severe glucocorticoid induced osteoporosis of the L neck of femur. Also osteoporosis in my lumbar spine, femurs and R neck of femur!! . I was commenced on a Aclasta infusion the following week. I have since changed GP. It pays to take charge of your own body and be assertive.
He has requested a general set of blood tests plus an ANA test which looks for antinuclear antibodies in your blood. If the test finds antinuclear antibodies in your blood, it may mean you have an autoimmune disorder. An autoimmune disorder causes your immune system to attack your own cells, tissues, and/or organs by mistake eg PMR
They will give him & you a better picture of what’s going on.
Don’t worry, it’s good to have a baseline & not many people get an ANA Test so l’d be pleased.
It’s over a year ago since the blood test showed up I was low in B12 and since then I have been getting a B12 injection every 3mths 😩with out explanation if I need it or not. Could it be making my symptoms worse 🤔
Maybe time to look up side effects of too high B12 just in case? My husband has low B12 and our former doctor didn't bother to get him tested after he'd been on it for some time. Eventually she agreed and his level was, she said, fine and he should keep on taking the same dose. He was not getting injections but takes 1000 mcg daily pill. He doesn't ask for numbers. But he had some weird symptoms. New doctor has tested him much more fully and his Vitamin D level is very low so now he's taking 10,000 IU D3 every second day. So there can be any number of reasons why someone has symptoms. I personally think that if people are getting a therapeutic dose of something it isn't a bad idea to have testing done fairly regularly, but I don't know what is considered a reasonable frequency for such things as therapeutic Vitamin B12.
Thank you for this information. I have to go back in 4weeks to see him and I will have him check it again 🤞at the moment I am taking 2000IU Vitamin D 😊
There is something I've just remembered about Vitamin B12. Some people have low B12 and are fine after they take it for a while. Other people actually lack something they need in order to metabolise it properly and they will need to take it always. If you are getting a regular injection that is probably why. But I still think it wouldn't hurt to be tested maybe once a year. Something to check I suppose.
You need acid stomach condtions - and low B12 is usually associated with pernicious anaemia where there is a lack of acid. But other a/i disorders can contribute. And so can long term use of antacid medication of all sorts. Like PPIs.
You don't need a referral letter to get a private dexa scan. You can just book it yourself. But the results will go to your GP. I had exactly the same response from my consultant saying it made no difference, but I fought for it. It showed my osteoporosis was now far worse than before. Plus it will now be a guide for me regarding the steroids if I repeat it in a couple of years.I always thought having a B12 injection made people feel like a new person, hence I was always keen to find out what my levels were but they've yet to do it. I take 4000 iU of VitD a day and have done for many many years, it is just within normal range now.
Sorry your GP wasn't very forthcoming in explaining things to you. You definitely need to be on the ball and have all the information at hand as things can easily be missed.
Thank you for asking that question because it prompted such a wonderful reply from Snazzy D, I am primarily an observer on this Forum rather than a giver of advice - so here's something that I have seen many times in posts but I don't think has been mentioned so far in this thread. If the results of the tests for inflammation markers come within what the Doctor's 'handbook' says is the 'normal' range he may say you don't need Pred any more so must come of it pronto. But the results may be showing 'normal' because Pred is doing its job. If you come off Pred abruptly at this point you will be back where you started. I haven'tread any accounts of attempts to have that conversation with a doctor but I'm sure, if the issue arises with your doctor, friends on here will assist.
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Blood test frequency 
Normal blood what now?
Blood testing in Florida
Why has my GP requested a blood test?
What should I expect?
