3 years on!: Hi everyone Bella here. I’ve been a... - Bone Health

Bone Health

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3 years on!

Timothy0172
Timothy0172

Hi everyone

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

7 Replies
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Hello Bella, I’m new to all this osteoporosis lark so I’m not sure how much I can contribute to things. I do think it is worth joining the ROS though - they have so much information on offer and you can all their nurses for advice.

I have a friend who has an annual infusion of alendronic acid. She has stomach problems so couldn’t take the weekly tablet. She finds her annual infusion to be good. I think she is on her third one now and said it doesn’t take long at all this do at all.

When you stop you ur denusomab (Prolia?) you must go onto a bisohosphonate or something else straight away otherwise I think you get rebound fractures.

There are lists of calcium rich foods which might be useful for you - you could probably work out how much you eat on an average day which would help you know how much to supplement. It’s the same for vitamin D - they list foods on there too. I find vitamin D easier to deal with I supplement every day and my vitamin D levels tested regularly so that I know how much to take. I’m in remission with thyroid problems so I like to keep my vitamin D well up in its range. I’ve always bought my vitamins online - from Amazon or Future you in Cambridge. I don’t take multivitamins and I do regular home fingerpick blood tests to be sure I need what I’m taking (not for calcium though.)

I find calcium harder to deal with, I tried two different calcium supplements and didn't get on with either of them - they really upset my IBS. I bought some calcium picolate recently and that seems ok. So I take one of them as well as topping up with lots of things suggested on the ROS leaflet that I like - I don’t like milk and yoghurt which doesn't help much so I tend to work through the things I like on the ROS list of calcium rich foods. Basically I’m doing my best and hoping for the best.

You should definitely take K2 - it directs calcium to your bones. So every day I take vitamin K2 Mk 7 with Natto and as far as things go I’m happy with that. I’ve tried a vitamin D&K2 combined but I’ve read they should be taken separately so I take individual ones now.

I take D3 in a gelatine capsule rather than a tablet, I take magnesium too, but that’s a tablet and I also take Omega 3 Algae oil capsules and a high strength vitamin C plus zinc capsule. The algae oil is quite expensive but it’s a three month supply and I’ve found it has really helped my very dry eyes so I just pay up. I’ve got some boron and I take it on and off because I eat quite a lot of things that contain boron.

I do Pilates twice a week in a class that is aimed at people with things like osteoporosis and I try to walk every day. I’ve got a Margaret Martin video which has lots of weight bearing movements and stomping around, that helps to strengthen bones.

Actually you sound pretty positive about life even though you say you feel a bit dejected at the moment. I think maybe osteoporosis does that to you - or it has done to me - I’ve had spells like that where I feel if not ‘doomed’ - certainly a bit gloomy - on the other hand this covid business doesn’t exactly help does it. .

Your poor friend - she is very lucky she made a good recovery from her horrible accident. Not the nicest way to discover you have osteoporosis although I don’t suppose there is any nice way to discover that!

Good luck with your scan on the 19th.

Can you please tell me what the ROS is?

Hi, it’s the Royal Osteoporosis Society. It’s a good thing to join but you don’t have to. I found the page here for you for calcium containing foods, there’s another one for vitamin D and lots of other good stuff.

theros.org.uk/information-a...

Thank you so much. I had never thought to look them up again to properly see what they say and advise.

Very kind of you. Xx

This was lovely of you - thanks xx

When I started denosumab (Prolia) last year I was told that it had recently been licensed for use for 10 years, so if you are okay on it you could ask to keep going. Stopping it seems to cause many problems

Timothy0172
Timothy0172 in reply to walk21

That’s encouraging for the next 7-8 years then! Thank you!

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