My rheumatologist said you don’t wait to see if you need it, you take it weekly to prevent osteoporosis. Too late when you have. Pred is going to leech calcium from bones whether it be in small or large amounts, prevention is key.
I too had an early hysterectomy. 23 other operations and have GCA/PMR and Fibromyalgia.All I was saying my rheumatologist recommends Alendronate straight up to prevent osteoporosis. I was on high doses of pred for a long time. It certainly wrecks your bones and skin.
Not always - I've been on pred for 16 years and not been on a bisphosphonate until lest year. My bone density has hardly changed. My shin bone skin has interesting bruises because of anticoagulation therapy but it is the only skin that is thinned.
A week or two ago we were told in an excellent talk by an experienced rheumatologist who specialised in osteoporosis that we are at a greatly increased risk when on pred and the thresholds for starting medication are quite a bit different. Anyone with a t-scores in their dexascan that are worse than -1,5 needs to take something and bisphosphonates are preferable to just calcium and vit D. It isn't just the bone density - pred affects the trabecular structure of bones and makes it less strong and the most concerning effect is on the vertebrae.
I have asked for a bone scan as have been advised to resume taking Ibandronic acid. This is in light of the possibility of a knee replacement. However my GP said they don’t routinely give these scans as it is assumed that after a couple or 3 years on Pred my bones would show signs of thinning.
They also don;t tell the whole story. Two of us on here had "good" dexascan results but still developed spinal fractures. Bisphosphonates do more than increase or mantain bone density - they also stabilise the tradelcular bone structure which is also very significant spinal fractures.
I had two long conversations with them before starting - I get very anxious with any new medication - and it was very helpful. I did request and wait for my DEXA scan results first before starting so I could make a more informed decision.
Thank you for this link. I have wedging in my spine and after 5 years on Pred am about to see a new rheumy on the advice of my GP and probably start some bisphosphonates. I am a retired dentist and very wary of these since they were first introduced Will further investigate your link.
It is also helpful to hear how many on this site have successfully used Actemra. But then you do need to get off that too. I am in Australia so hope I can use that. I see the new rheumy in March so fingers crossed. Have had two duff rheumy in my five year journey but great GP. 🤞
Thank you sooo much for this site. Life saver for physical and mental health.
Getting off Actemra is not a problem - you don't have to taper it. But it has cured nothing and if the underlying disease process is still active, then the inflammation will build up again until it causes symptoms. But that is a differnt problem.
The dental problems seen with bisphosphonates are almost exclusively seen in oncology patients who required frequent infusions for their cancer. In oncology, patients are likely to be given an infusion every 3 or 4 weeks whereas for osteoporosis it is one infusion a year for 3 years in total. They are exceptionally rare in patients on oral bisphosphonates.
I too was referred for a Dexa scan, just on Monday. My GP prescribed AA and gave me 4 tablets to see if suits. However, I have decided to await the results. On Prednisolone since diagnosis and although started on 15mg, down to 12.5, 10, 7.5 then 5 back to 10. I've just been increased from 9 to 10mgs. My post definitely got a reaction of 'rollercoaster' and have a much better understanding now. I believe you are having a more settled titration. Having watched a Webinar by the Royal Osteoporosis Society today I don't feel as concerned as had been so if results poor will take AA and with an attitude of better late than never.
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