my dilemma Denomosab

[Majorboxe]

I was diagnosed with osteoporosis three years ago with T scored

S in my lower spine of-2.6 ,andhave been following the natural route wit additional calcium, vitamin D,k, etc. My recent dex

A scan results shown that my lower spineL1 is now -2.9 and L4is -2.7. The other scores remain the same.

Between -2.2 and 2.7 in my spine and - 2.6 -0.6 in my femur.

The consultant suggested that I now try six monthly Denosumab injections . I am now worried about the side effects and long term implications of this but can’t seem to find an alternative and have a fear of my bones becoming weaker.

can anyone help?

[Met00]

Those scores aren't bad, and not necessarily enough to justify any osteoporosis medication, let alone Denosumab, which is intended for those at higher risk of fracture. Do you know what your fracture risk is? Do you have other risk factors apart from your t-scores, for example have you had a fragility fracture, do you take certain medications that raise your fracture risk?

Have you already taken a bisphosphonate for osteoporosis at any time? That's the usual one to start with - Alendronic Acid tablets, or if you can't tolerate oral bisphosphonates, Zoledronic Acid infusion. If you take Denosumab you need an exit plan, which involves going straight onto a relay drug (almost always a bisphoshonate) as soon as you stop the denosumab, to reduce the risk of rebound fractures. This is something I hope your consultant has discussed with you. Personally I'd want to be certain I can tolerate bisphosphonates before starting Denosumab!

[Majorboxe in reply to Met00]

Thanks for your advice. The consultant says very little apart from”try not to fall” and “it’s up to you” ! I had compressed vertebra at the base of my spine but I don’t think I’ve had any others. Do they show on a dexa scan? Some days I’m fine , I walk and do two dance classes a week. However, I’m always concerned about my back and it sometimes feels uncomfortable. My mother had curvature of the spine in later life, probably due to osteoporosis. There seem to be many side effects to all the medication for osteoporosis , problems with teeth are an issue.Do the biophosonates work and over what period of time.

[Met00 in reply to Majorboxe]

Bisphosphonates lower the risk of fracture by about 50%. That means if your fracture risk is 10%, a bisphosphonate would reduce it to 5%. However, you need to keep it in context. In the same example, a 10% fracture risk means that in a group of 100 people with that risk, 10 would fracture (in the next 10 years), 90 wouldn't. So if all of them took a bisphosphonate, 5 would fracture, 95 wouldn't, but 90 of those 95 wouldn't have needed the medication to prevent fracture. It's explained very well here: nice.org.uk/guidance/ta464/...

There's no guarantee that any of the meds will prevent fractures, they just reduce the risk. I believe Denosumab is slightly more effective than bisphosphonates, but as I mentioned before, when you stop Denosumab there's a significant risk of rebound fractures, so it's absolutely essential to go straight onto another osteoporosis medication as soon as you stop, in order to minimise this risk. I don't know how long any of them take to start making a difference.

I think some fractures can show up on DEXA, but not necessarily. When you say you had a compressed vertebra, was that a compression fracture, or compression between 2 vertebrae (caused, for example, but disc compression)? If you've fractured, that raises your risk for future fracture, but this should have been included in your fracture risk (FRAX) calculation. If you haven't been told your fracture risk, I would ask for that, because that might help you decide on the way forward.

[HeronNS]

As you are seeing a specialist I assume you also were checked for "secondary causes of osteoporosis"? The other thing is you didn't mention exercise in your description of what you're doing. It's just as important to do some simple load-bearing exercise as to take the supplements you've been taking, as well as a healthy diet. This can be as simple as a daily walk, perhaps with the addition of using a weighted vest if this is deemed safe for you (you start with a tiny amount of weight and increase slowly). Other activities which improve bone density include using Nordic poles and tai chi. Even swimming, although not load-bearing, is helpful as stronger muscles increase pull on the bones, which in turn encourages the bones to get stronger! Cycling does not help bone density as your weight is taken by the bike, whether regular or stationary.

If you can see a physiotherapist you can get some techniques for protecting your spine, which could be very helpful to you, more useful than "try not to fall"! And also exercise like tai chi improves balance, which also helps you not fall.

[t1gernidster]

Please ensure you have had a simple blood test to rule out hyperparathyroidism. It does sound as if your consultant is rather uninterested as many are but this is essential before considering any medication at all.

parathyroid.com/

[dog45678]

It is always deverstating to hear when anything has got worse, don't lose heart, your scores are not a life sentence. There are options avaliable if you do not want to immediately jump on the drug route. Exercise is great, but not everyone'scup of tea, good old fashioned power walking can be very effective. It is the impact as your foot hits the floor that sends the signals your cells require to produce bone (very basic description). Nutrition, life style all play a part. Look into low intensity vibration therapy, please note LOW not high! High is contraindicated in many conditions, particularly osteoporosis and carries risk warnings. Wishing you all the best. You have a choice!

[DazzleP]

I have been on denosumab for nearly a year now. It is one of the best treatments out there. Plus you don't have to take tablets every week or so. I don't have any side effects.

[agingfeminist]

I have the same response as DazzleP. I have been on denosumab for 3 years. NO problems. I will be on it for life...why go from there to biphosphonates? (unless you have to). You will have to do something to stop the progress of osteoporosis. It doesn't really improve. You need to halt the deterioration. Good luck.

[Met00 in reply to agingfeminist]

The issue is for anyone who is unable to take it for life, as you have to then take a bisphosphonate for at least a year after stopping denosumab. If you can't take bisphosphonates and you have to stop denosumab, there's a very strong risk of developing multiple spinal fractures.

[Majorboxe in reply to Met00]

So much conflicting information ! Thank you for all the replies, I now have to make a decision, hopefully the right one!