Has anyone on here had a Denosumab injection? Looking to find out about the side effects as my Mum is considering but looks a little scary!

[Bilster]

She has suffered with SLE for a long time and we worry on additional side effects of the medication

[Hidden]

Hi blister, sorry after 5 hours you still have not had a reply from someone who has had this jab. Maybe like me they don't know what it is,(sorry if I have offended anyone that has heard of it.) I just googled it and can relate to bone thinning. However, the do's and dont's are quite serious and as a lot of lupus meds would stop you from having it, I can understand why it isn't offered to people like me. Even prednisolone is banned and all the dental stuff was too much to understand. It's good of you to ask for your mum, and it hope she reaches the right decision for her. Fingers crossed you may get a reply that you wanted soon!!!!!!

[EOLHPC]

I'm like 6161: i feel you're good to look into this on your mum's behalf. I think 6161 has given you a really good reply. I too had to google denosumab....but I had a shrewd sense it would be for osteoporosis: is this why your mum has had it prescribed?

If yes, and if her osteoporosis is being caught early, perhaps my experience could be useful. If your mum is being treated for advanced osteoporosis, or another severe condition, then I would say a double appointment to fully discuss denosumab treatment with a well informed gp and another with your mother's rheumatologist would be in order. Treatment with these sort of meds can be closely monitored and problems caught early....so denosumab may be right for your mum. And her many years of treatment for SLE could well mean she has had to get her head around the pros & cons of taking major medication...something we all do our best at....cause meds can help us so very much. My husband spent 3 years on a somewhat similar medication to denosumab after decades on steroids affected his bones...and he benefitted.

Several years go, in my late 40s- early 50s, well before my infant onset SLE was re-diagnosed & treated 2.5 yrs ago, a series of 3 yearly nhs bone density scans indicated my rapid rate of loss of bone density was serious enough to be treated with bisphosphonates - the oral form caused my GI conditions to flare, so I was to have the intravenous version. Bisphosphonates are powerful meds, somewhat similar but different to denosumab, sharing some serious side effcts. Like you, I was scared by the side effects, including big time dental/oral issues. So, i delayed treatment while i focused on researching bone density treatment. the result was that I chose to avoid bisphosphonates and instead conscientiously followed a lifestyle management route of diet+supplements+exercise... And within 3 years, scans confirmed I'd slowed my rate of loss of bone density...ok, I still have osteopenia & a degree of osteoporosis, but, so far, my drs seem happy with my decision to avoid bone density treatment with heavy medication

So, it seems to me that it's sensible your mum & her drs take time to look carefully at the pros & cons of denosumab as part of your mum's treatment plan along with the other meds she is taking. It could also help to check how familiar her dentist is with meds like denosumab...most reputable dentists are aware of the caution required when treating patients on this kind of treatment.

Forgive me if i've been going over ground you've already covered. I too hope you get a reply here from someone with actual experience of denosumab

And I send you and your mum every best wish

[MargaretGail]

Sorry just got to this. I have had two of these in the last four months. I felt great within 3 days but it wore off quite quickly - 2 weeks ish. Only side affect was and this sounds worse than it was was a mild fungal infection.

[Bilster]

Thank you everyone for the feedback, we are going to wait until she has the chance to sit down with the SLE specialist in the next couple of weeks. The treatment had been suggested by her rheumatologist as an alternative to the current tablets she is prescribed for her osteoporosis which leave her feeling terrible for 2 weeks of every month. She is a strong woman and has been in and out of hospital / intensive care over the years, i guess i don't want her to have any more to deal with than she already has. Really appreciate you all helping ..... will let you know what we find out and decide as maybe it can help someone else.

[EOLHPC in reply to Bilster]

I like your approach to this!

Please do let us know how things go

Good luck, take care

[Hidden]

Yes please let us know, some of us may have this decision to make at some point.

[river]

Please can you explain the dental problems you mention.

[tashi]

Hi my last flare up attacked my bone marrow and immediate steroid treatment (prednisolone saved my life) was started. Had to wait until they got my red & white cell counts high enough to start treatment, about 2 months. I've been told will have to stay on steroids for at least another 3 months before reducing them and finding out if my bone marrow has started to function properly again. DXA scan showed steroids have started to cause damage to upper spine - also the Omeprazole taken at same time inhibits calcium uptake, so even though I have a healthy diet my body isn't getting nutrients it needs. Have just been prescribed the biophosphate tablets to be taken once a week, consultant said that hopefully after finishing steroids my bones will recover (even though I'm post menopausal female!!!). Here's hoping. Blister you're mum is lucky to have you doing research for her, well done