Just back from my 2nd Rheumy appt, (should have been Feb! for which she apologised). She was pleased that I have managed to get down from 10mg to 9mg Pred since last Oct, but had not heard of Vit K2 being used for PMR.
Then she wanted me to have 2 blood tests, one to measure Calcium levels and the other for PTH, (Parathyroid Hormone?), which had to be at the lab within 4 hrs, which was arranged there and then. She is thinking I may have Hyperparathyroidism, which would cause aches and pains when I try to decrease the Pred dose. The only cure for that is an operation to remove the Parathyroid. She wants me to stop taking Calcium supplement but continue with Vit D and wants me to stay at 9mg Pred for 1 month and then try and decrease by 1mg a month and see how it goes. Try and bear it for a week at each decrease if the pain returns before going back up. Thanks.
Now all I have to do is get rid of the Sciatica!! Think I'll have some chocolate to cheer myself up.
Written by
Marcy47
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Um - K2 isn't used for PMR, it is to help prevent osteoporosis, useful when on pred. So you can excuse her...
Interesting to see about your calcium/PTH. It is something that should be monitored - raised calcium is rarely due to anything else and GPs should monitor patients while on pred.
I was telling her that K2 is used to help bones absorb calcium while on Pred, have I got that right? She did say that my last test for Calcium in March showed almost normal readings, so she wants to double check what is happening now.
Did she do a Vitamin D test, because if you are deficient in Vit D it causes aches and pains just like pmr and it is an exclusion test which should be done and corrected before they make the diagnosis of PMR.
So get that Vit D test done.
400 units per day will do nothing. The maintenance dose once you are at the correct level is 1000 units per day.
I buy them at Boots, £5.10 for 90 tablets and have taken them now for nearly six years.
I had to have 40,000 units per day for a month, another blood test, then 20,000 a day for two weeks, another blood test and bingo at the right level and it has stayed there with the maintenance dose.
Not sure if my GP included Vit D in all my blood tests, I will check my records on-line. How much is a unit of Vit D?, I take 1 multi-vitamin a day that contains 20micrograms and I have pills from Holland and Barrett that contain 10micrograms.
10 micrograms is 400 IU. You are taking 1200 IU - so that is OK. I doubt a GP in the UK will request vit D routinely. But if you are deficient - even 1200 IU is not really enough.
I don't know, I think things may be changing; I was always taking bloods for Vit D, after patients had been to the GP for aches and pains, fatigue, fuzzy brain, old age....
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