Bella here. I’ve been a bit quiet for a while just ticking along, having had 5 denosumab injections to date, next one due next month actually.
Meanwhile, Monday 19th I’m going to have my second DEXA scan done privately and see if these injections have made any difference. I’ve done this so the scan is done on the same machine. My private consultant told me I would stay on the injections indefinitely, my NHS one said I should have started on daily injections (of what, I don’t know) from the very beginning but I should try the Denosumab for 3 years (which it nearly is now anyway).
I don’t think I’ve had enough blood tests done for Vit D and Calcium levels - I take AdCal as given by my GP - but don’t know if the levels are too high or too low. I’ve read here that it’s best to aim for over 70nmol for Vit D - is that the general consensus? but Calcium levels, I don’t know what I’m aiming for.
A friend recently had an accident and broke her back and was discovered to have osteoporosis, she recovered from the broken back luckily and is now having a once yearly injection (I don’t know what drug it is but I suppose it’s on the internet where I can find out) at Addenbrooke’s in Cambridge. Is anyone on that same yearly injection out there? Any thoughts or recommendations over other treatments??
I don’t think I take enough Boron in my diet so should probably get capsules and take Vit K2 now. (Holland and Barrett best?).
Can anyone recommend what else I should be taking, looking out for, changing treatment or ask the consultant on Monday? Despite readings of 4.5 in my spine in early 2018 I still feel If I’ve never broken anything in my life am I doing the right thing, with the risk of fractures if I come off these awful drugs?
I should point out I’ve never had any side-effects from the Denosumab but get very worried when I read of all the troubles a lot of you have had and are having with it. On balance, both consultants and some of you dear ladies (and the odd gent?!) have agreed that with such high readings at only 60 I have to be on something. (Not those awful gastric drugs though. I couldn’t tolerate them).
I’ve been a bit laid back about what I’ve been doing, probably because of no side-effects. If I do get fractures because I have to come off the drug I shall be livid!
SO Does anyone have experience of the yearly drug and should I be being a little more proactive in asking questions and taking other stuff?
(Goodness - it does sound as though I’m asking you to sort me out without my doing anything! Sorry - I suppose I have so many other health problems I’ve become a bit dejected. And I know so many of you suffer terribly from side-effects, fractures and many other unrelated or related health problems. I take 18 pills a day...I didn’t take a thing 10 years ago!).
Best wishes and thank you to you all! You are a fantastic community supporting each other. Xx