Diagnosed with PMR/GCA 2 and half years ago. Managed to reduce steroid to 4mg Prednisilone by mid May 2020 then symptoms returned - UTI at the same time - blood test showed CRP up to 34. I increased to 9mg Pred following advice from this forum. I contacted GP and came under Home Care Team for 2 weeks investigating any other health issues - discovered B12 low and given injections. I am now much better. My rheumatologist has advised that after month I should reduce daily by 1mg on monthly basis. A recent blood test indicated CRP now down to 6.4. Previously I had been doing the slow taper of 0.5 mg per month. How would you advise me to progress from now? Should I try the 1mg reduction or go back to a slow taper or maybe stay at 9mg for longer till CRP lower?
Thanks
Irene
Written by
Jantayl
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I'd try a reduction of 1mg at a time to start - if it works that will get you lower quicker. If it doesn't - go back and do 1/2mg at a time. You've only been higher for a month - it shouldn't be difficult and if you had a UTI at the same time that probably caused the flare.
Difficult to say - we'd usually say give it 2 weeks at least under normal situations and it is a month since you went up. At least your rheumy isn't pushing you ...
She spoke to the doctors attending me. Noted that I had gone up to 9mg daily myself! In her letter to my GP she suggests that I remained on this dose for a month then ‘provided the PMR symptoms are settled I could reduce slowly in 1mg steps every 4 weeks provided the symptoms remain settled and CRP returned to normal range’. She suggests a telephone review in September 2020. A sign of the times!?
My son reports that Edinburgh has had its moments. They even got their wee chapped knees out 😂.I feel like a limp rag with an impending thunder headache.
Sorry Jantayl. I grew up there, so I am allowed to tease.
I live in Fife and yes we have had some hot really sunny weather but....we should have been in France for the past 2 months with our camper van! Sadly not to be and not just because of the virus. My husband is steadily going blind waiting for cataract removal - surgery planned weekend of ‘lockdown’. Hey ho - can dream about next year.
Definitely no Cataract operations this year then? I was kind of hoping that they might re-start. I was diagnosed with Glaucoma and Cataracts just before lockdown with definite loss of some peripheral vision. It worries me that Pred can accelerate the growth of Cataracts. I have heard very positive reports of the results of Cataract operations and almost welcome it, my eyesight has really deteriorated.. We have a state of the art centre at our Northern General Hospital and this is all they do.
I am sorry that your husband’s Cataracts are at an advanced stage. That is a worry for you both. Remind them you exist if you haven’t already - it produced some action for me. I see the ophthalmologist today, at the eye hospital.
2 months in France in your own camper van sounds just great . They seem to be unlocking Europe to us.
I can’t even engage with what we’ve missed this year with 2 daughters and 4 grandchildren in Australia. One family was coming here May/ June and we were going there in October. Birthdays, house moves - so much. I simply can’t think about it as my health woes continue to pile up.
My husband says that we had an relatively uneventful 60 years and then the 4 horses of the Apocalypse came along at once - Flood, Famine, Plague etc. He’s not wrong.
I was brought up in Edinburgh. My youngest son is at University there. My husband fetches him home on Tuesday. I’m shielding but he does have the top floor of our house.
Our daughter lives in Edinburgh working for Public Health Scotland and hopefully keeping us right. She has been developing the training for the Test & Protect procedure. I keep hoping that the NHS starts routine procedures again but I read somewhere that priority is being given to under 70’s! Definitely not fair. I hope you get to see your family soon....although in the meantime ‘zoom’ etc is a wonderful media.
I was told today that those who had already lost sight in one eye were being given priority obviously fair, but it is still considered to be a dangerous procedure during the Pandemic.
Thank you for this. I shall telephone the hospital dept tomorrow to find out when they will be opening for such procedures and certainly use the argument of blindness and falling which he is doing more frequently. Not sure it will go anywhere but I shall try.
You're like me (or rather 'us') Jane. 60 relatively uneventful (?) years. What more could we really want? Some would just love 60 hours of peace/or no pain. I get mad at myself when I have a bad day and try to think "this is nothing - nothing at all - pull yourself together". We'll survive! 💥💥
I did that last year. Dreamed of this year and the camper van. Not to be.
But that is crackers - cataracts will be totally life-changing for a 70+ person too. Make them more likely to fall - and risk increased of a broken hip ...
It will be. But I can't do all that is needed on my own - it has been the luxurious version of camping. Time to go up another step. But still on a campground ...
Hotels? Never! Need self-catering or he'll not eat anything ... 5* campsites are fine - in fact, as long as it is an ensuite mobile home 3* would do ...
I had our trip abroad all planned in February. - through Germany and in to Italy - staying at a caravan site on Lake Garda where we have been before. Near Desanzano - not sure about the spelling. And then into the south of France.....but the ‘best made plans....go aft aglae’...and these certainly did! Perhaps next year??? Healthy permitting.
The Italian Lakes what a pang of longing. Once we had the honeymoon suite , a little house on the edge of Lake Como, in the lush gardens. I felt a bit guilty because a beautiful bride and groom were in the big hotel. I leave bargain hunting and holiday planning to my OH. He’s good at it.
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