it is now well over 2 years since last I posted and I’m feeling a bit guilty about not being in touch. My symptoms finally disappeared over 2 years ago but I continue to take 1mg prednisolone per day. It’s my insurance policy! 😊.
I have a question: having been on pred from 2018 - 2022 what’s the verdict on now stopping taking the bone formula I was on?
I send my kindest regards to all forum members and particularly to our brilliant panel members.
Have you had your bone density checked? Even if you have, they recommend you only stay on the bone medication for maximum five years.
Piglette - I think I didn’t press reply when I answered your kind response to my recent post. I had a Dexa scan way back in 2018 or maybe 2019: there was some evidence of osteopenia. I am on nhs waiting list for another but I’m not too convinced of accuracy of these scans as it will be both a different machine and operator. I hadn’t heard about recommended time to stay on bone supplements.
I am always filling things in then forgetting to press GO!! I suppose a Dexascan does give you some feel as to your situation, although it may not be the gold standard which we would all like.
Welcome back - and especially with such a good story!
What exactly do you mean by "bone formula"? Have you had a dexascan done since then?
Thank you PMRpro. Bone formula by a company of repute containing all the essential elements for bone health. See reply to piglet text for Dexa scan info. I hope you are in a good place at the moment.
No reason why not - I think DL stayed on her calcium/vit D after stopping pred on Dr's advice. It is the bisphosphonate-type drugs that shouldn't be taken forever, except denosumab/Prolia.
As PMRpro has said, the report from DEXA scan in 2019 [3 years after finishing Pred] suggested I remain on VitD/Calcium supplements even though BMD [bone mineral density] values were good.
Still am on them with no issues.
Nice to be in touch after all this time DL. I, too take vitD/Ca supplements and like you, no issues. PMRPro advised against biphosphonates. I haven’t and wouldn’t touch these with a 10 ft barge pole!
I hope you are in good spirits and health.
Absolutely, thank you… although I did take AA during GCA years [family and personal history]. Whether they were really essential I will never known- but as I had no issue with them, it’s immaterial really.
Hope you’re good as well..😊
Does bone formula refer to calcium supplement, or to an osteoporosis drug?
This is amazing! Congratulations! you are making me think that maybe I should resign myself to just stay on 1-2 mg because each time I try to go below 2mg, I flare. I should not be so greedy.
I think you are right to maintain a 2mg dosage. That dose is so low it won’t have a till effects. Good luck - and thanks for response.
personally I would stop the Prednisalone (very gradually) to minimise any steroid side effects. There have been many posts on how to reduce gradually which is what I used when my symptoms had decreased after four years of PMR. Good luck.
aGCA maybe in remission?
After 3 Years my GCA is in Remission
in remission
Remission
Remission (Requested Testimonies)
