Decision time re bone drugs

[FleetRose]

My DEXA scan earlier this month has left me very depressed and anxious. T scores hip -2.9 (neck 3.1), spine -3.9 (L1to L4 -3.2, -3.6, -4, -4.3).

I have been taking bHRT since March this year. I am 74 so am still unsure whether this is safe. I had a mammogram and ultrasound of uterus not long before but there was no check on heart, bloods etc.

I have also used a Marodyne for 18 months. I tried oral bisphosphonates many years ago but stopped because of gastric issues. I take long term steroids for polymyalgia, currently on 7mg, down from 20mg 2 years ago. I also take levothyroxine and in the last year T3 (Liothyronine) for Hashimotos which was undertreated for years.

I am devastated because I have been ill with polymyalgia for 2.5 years, have recently begun to feel much better and am mostly pain free. I now read about the side effect of drugs which can cause muscle aches and pains long term. It would not take much to trigger PMR gain.

Over the years I have reacted badly to many vaccines/drugs which seem to undermine my health further. I do understand that this does not compare with the life changing effects of a fracture but I still feel at a loss. Advice seems to change. My Rheumatologist told me exercise cannot build bone density (I thought the Liftmore programme proved otherwise).

He has advised me to have Denosomab injections but did not discuss what follow on treatment there would be. I understood that the thinking now is for a bonebuilding drug first but my T scores are not under -4 (except individual vertebrae) so was not offered. Am I able to query this based on my high risk of fracture? (I'm also very petite 152 cm and 43kg).

Finally, he did say strontium ranelate used to work well but was not available now. I've heard strontium citrate mentioned as a possibility. Also collagen. Does anyone have experience of using these?

I know I have to bite the bullet now and take some sort of bone drug but I seem to go round in circles. Can anyone offer some advice? Thank you.

[RedApple Administrator]

FleetRose, you may be best to join the dedicated HU community

Bone Health and Osteoporosis UK and ask your questions there. healthunlocked.com/boneheal...

[FleetRose in reply to RedApple]

Thank you - done.

[Hedgeree]

Hi FleetRose,

Some forum members use a supplement called Bone Balance. I don't use it myself but I'll tag TiggerMe as they were taking it at one point (possibly still are?)

It has been discussed a few times on the forum; It might be worth having a look?

bonebalance.co.uk/

[AmandaK]

I'm very sorry that you're struggling with this. It must be so disappointing, especially as you've been doing your best to combat the situation.

Do your results show a deterioration in bone density? It's not entirely clear.

Re: exercise, it does strengthen bones, as well as muscles, as stated here:

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

So it's important to continue with exercise, even if it doesn't have a direct effect on bone density.

The issue is how much exercise can be tolerated. Presumably you're using the Marodyne based on the research about the benefits to bone health and its usefulness for those unable to carry out conventional exercise? Would it be possible to go back to the company for advice?

Also, is the issue directly related to your thyroid health?

I hope you can get some answers and encouragement.

[Jemima48]

This is a bit late, but I've just come across your post. Has anyone suggested teriparatide? I was put on it at 62 and without having broken any bones, so didn't meet either of the criteria (over 65 and three bones broken), so would have thought you qualified, especially with your history. It would build your bones for two years before denosumab or perhaps zolendronic acid.I was told today by a nurse on the ROS helpline that strontium ranelate should be back on August 20th this year (although it has already been put back once).

I hope this gives you some hope and wish you all the best.