New member here

[LCfan]

I was diagnosed in June 2019 with PMR after an unexpected attack out of the blue , when I was in so much pain I couldn't move and began shaking and with my teeth chattering. An excellent GP pulled out all the stops, arranged immediate blood tests and other examinations and very soon prescribed prednisolone.

I had taken prednisolone years ago when I was 30 to 42 in varying doses for ulcerative colitis. No doubt as a result I now have osteoporosis, as well as arthritis which is mostly in my hands, wrists and feet.

I went from 15mg of pred gradually over 18 months and managed to come off it in December. However after a few weeks I had a flare up and am now back on 5mg for 4 weeks then down to 4mg for the next 4.

I already take 2 adcal each day and wonder if extra vitamin d would be advisable and at what dose? I also take an alendronic acid tablet once a week.

[DorsetLady PMRGCAuk volunteer]

18 months is very quick to get off Pred...not really surprised you had a flare.

If I were you I’d maybe taper slightly more slowly this time around - either 1mg every 8 weeks or 0.5mg every 4 - whichever suits you best - same difference in the end.

As for additional VitD , it might be worth a try, certainly in UK we don’t get enough certainly in winter. But if you’re thinking about the COVID-19 connection, there are differences of opinion. The government advises extra, but according to the ZOE COVID symptoms study, they weren’t sure there was a significant difference between those on extra and those not.

[Thelmarina in reply to DorsetLady]

Love the thought of that ‘glare’ 😂. From an irate doctor? X

[DorsetLady PMRGCAuk volunteer in reply to Thelmarina]

Oops...have amended! 🤦🏻‍♀️ Although maybe should have left it....appropriate.

[PMRpro Ambassador]

Personally I take 4000 IU vit D throughout the winter. That is about the top of the recommended range for normal use and not so much that you would get to toxic levels in the blood.

Have you had your vit D level checked? It helps to know if you are deficient so you take enough.

[LCfan in reply to PMRpro]

I've been having monthly or 6 weekly blood tests to check the inflamatory indicators as a guide to steroid dose, but haven't had a vit D level check.

[PMRpro Ambassador in reply to LCfan]

Always worth asking for - they might oblige. You can have one done privately for under £30

vitamindtest.org.uk/

[LCfan in reply to PMRpro]

Thanks, I'll ask if it can be included in my next blood test. Meanwhile I'll get some vit D tablets anyway.

[Bcol in reply to LCfan]

My blood tests have always included a vit D test, think my doc just asks for everything every time

[LCfan]

Thanks, I will look for a reasonable dose of vit D anyway. Hardly been outside for months. Once spring or summer comes I hope to get out into the garden as much as possible.