Scleroderma & Raynaud's UK (SRUK)
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Denosumab and diffuse SSc

Hi I was wondering if there is anyone out there that has had/ or taking Denosumab, for bones, our GP has recommended that my partner who has diffuse SSc, should have this treatment after a DEXA scan. But obviously can't take it orally so looking into a once every six months infusion, any comments/advice would be gratefully received. Thankyou

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I started with Prolia (Denosumab) injections two years ago. I am due my next injection next week. It is very simple and the nurse at my gp surgery does it in my stomach (no pain). It all started after a DEXA scan and my gp wanted me to take Alendronic Acid tablets once a week. A big no no for us because if they get stuck in the gullet they can cause ulceration. Speaking to my rheumatologist he told me about these injections and the first two were done by the rheumatology nurse at the hospital and then passed over to my gp. I have a "passport" which I take every six months and it is noted down on it when I have it and also my blood test results for my calcium and vitamin D. There are also two blood tests to have done every three months to monitor calcium and vitamin D levels but this is a small price to pay.


Thanks for your reply, she had her first injection on Friday at the GP surgery, as yet no side affects and all is looking fine, she is having bloods next week to double check calcium and vit D levels, she has taken supplements of these for years anyway, as she does not absorb vitamins and minerals,

Thanks again


Hello, I came across your comment on Prolia injection. I know that was several years old, but I have Scleraderma too and wondering how you have been doing on this drug. If you could let me know if you still use it or have any side effects I would really appreciate it. Thanks do much.



My partner is the one with scleroderma and having the prolia injections, and has no side effects so far, she has had a slight increase in her acid reflux after the injection but this could be just coincidence as she suffers terribly with reflux normally due to the SSc. She has had 3 injections to date, one every six months. Next one due November. Hope this information helps. 😊


I have been on the injections for some years now and have not had any side effects. It is painless and when I asked the nurse exactly how it worked she told me that it travels round the body collecting calcium out of the blood and deposits it back into the bones.

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