I have GCA, just had my vit D levels checked 25(oh)d result was 105nmol. CAn anyone tell me what the optimum is please? I currently take 3,000 iu vit D3 daily, don't get much sun as it fatigues me.
Somerstsue, different regions can have slightly different ranges for Vit D levels but here in Surrey it is between 75 and 200. I am treated with occasional 3-month courses of Vit D3 at 1,000iu daily after the first Vit D blood test showed me to be deficient at 36. The first course increased the reading to 89. Some 18 months later it had reduced again to upper 60's so have just completed my second 3-month course and am awaiting another blood test. I suffer from reduced kidney function so my renal consultant prefers me to be treated with these short courses rather than be on a permanent supplement,
My vit D was 26. My GP has given me a supplement. My rheumy had said he did not think a test necessary, but my GP agreed with one. The rheumy was a bit annoyed but did not have a leg to stand on. He said "we don't normally bother to check vit D levels"!! I have my next blood test in a couple of months.
ptolemy, hang on to your GP!!!
Your Rheumy has never read the BSR Guidelines on Diagnosis and Treatment of both PMR & GCA.
As MrsO say, hang on to your GP.
mrs k you are so right, my rheumy is bone idle he thinks you give someone steroids and then cut them down as fast as possible and that is it. He never gave me a tapering plan, he never told me about the effect of steroids or pmr. He just wants to talk about the world news and his son. He gave me the impression I should just take the steroids, they would stop the pain and Bob's your uncle. Total waste of space.
The rumatology and internal medicine speciality are entirely differant. My rumatoligist is primarily looking at CRP mad SED/ESR while my physician is looking at my whole body. Both of these physicians have referred me to another specialist at one time or another. The blood tests for PMR-GCA issues are entirely differant than the tests for blood component content. My suggestion is to use your doctors for what they are trained to do. The advice that I needed to hear when I was first diagnosed was taper when changing doses rather than taking one 10mg step. Listen to your body and do not be afraid to step back one level when things start hurting until you talk to your ruhmatologist.
best Regards
Change your Rheumy - it is easy, quite a few of our people have done so. If you want to know how - send a PM.
Alernatively go to http://www.pmr-gca-northeast.org.uk/assets/pmr_resource_51.pdf and read the article on 5 things to look for in a Rheumatologist.
Thanks mrs k. I have talked to my GP who said I probably don't need a rheumy at the moment anyway and if I do she can send me to someone else. I am just amazed how bad some rheumys seem to be, how do they get away with it?