New member here: I was diagnosed in June 2019 with... - PMRGCAuk

PMRGCAuk

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LCfan
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.

10 Replies
DorsetLady
DorsetLadyPMRGCAuk 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.

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

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Thelmarina

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

PMRpro
PMRproAmbassador

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
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
PMRproAmbassador in reply to LCfan

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

vitamindtest.org.uk/

LCfan
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
Bcol in reply to LCfan

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

I'm always amazed how people are never surprised when you taper slowly over many years and still have flares. Sounds like you have experience with prednisone that isn't looked at through the prism of PMR/GCA. We just do the best we can with tapering and there doesn't seem like there is any universally correct way. But I would agree that slow is better for PMR/GCA. How slow is open to debate given it is hard to know when PMR/GCA actually ends.

As for Vitamin D, I currently take 2000 IU but no calcium. My level is mid-range. When my level was low I took 4000IU, when my level was high I stopped it for awhile and later resumed at 2000UI. I don't think I need the calcium but that's just me.

LCfan
LCfan in reply to DadCue

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.

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