Zelondronic acid

[Glasgow22]

Ive had 2 infusions of zelondronic acid, due another in August. Just been told I have 2 further spinal fractures. Devastated, what do I do ?

[Met00]

So sorry to hear that, it must be a terrible blow. Sadly there's no guarantee that osteoporosis medication will prevent fractures, and no way of telling, from your point of view, whether you might have had more fractures if you hadn't had the infusions, or whether it's made no difference. Your consultant should be able to discuss this with you and might offer you a different medication. You could also look at natural options, either alongside the meds or instead of if you're brave enough. It's certainly very important to eat a healthy diet and get as much weight-bearing exercise as you're able to do safely. Have you been checked for underlying causes for your osteoporosis: Vitamin D, calcium, thyroid and parathryoid blood levels should all be checked, as well as things like family history, smoking, alcohol intake, medications for other conditions, and absorbency issues like coeliac.

[Cappuccinobaby in reply to Met00]

Great advise to get thyroid and parathyroids etc looked at. Hyperparathyroidism is a definite cause of osteoporosis which can be somewhat reversed following surgery. See hyperparathyroidUK on facebook

[Sunseaandsand]

Hi Glasgow22,I am sorry to hear of your new fractures.

Have you been given pain relief and how are you managing?

Have you had a fall or done anything that may have caused them?

Dependant on the bone density to begin with fractures can still happen whilst having treatment, treatment slows fractures down but is not a guarantee against having them.

It is so difficult sometimes to know which road to go down.

I have had so many of the treatments that have had to be stopped due to bad side effects, and so wish for one that I am able to tolerate.

I now have 8 fractures in the spine and envy everyone who can have these treatments without having side effects.

Your consultant will be able to give you the best advice. It is possible now you have fractured again that they may offer you Forsteo or some other treatment rather than keep you on the Zoledronate infusions.

If I were in your position I would ask to speak or have a message passed onto whoever you are under for your treatment.

In my experience when stopping treatments and having gaps in between the bones weaken even further so stopping treatment does not seem a good idea especially if it is not causing bad side effects.

If you are asked to have your next infusion in August and not offered anything different then I would definitely have it.

Stay safe andI hope you get the care you need.

[Glasgow22 in reply to Sunseaandsand]

Thanks, I have been exercising every day. I also have ms and use a wheelchair. So am wondering if the increased standing has been too much for my spine.

[Cappuccinobaby]

See my reply to met00 you need to find the cause. Get your GP to test calcium vit d and parathyroid hormone. You could have hyperparathyroidism which leads to osteoporosis and kidney stones. See hyperparathoid UK on Facebook

[Glasgow22 in reply to Cappuccinobaby]

Thanks, think I've been tested for most but will check.

[Cappuccinobaby in reply to Glasgow22]

Most GP's dont understand hyperparathyroidism. Have your GP test your calcium parathyroid hormone and vit d from same blood draw. If calcium and parathyroid levels are high look up hyperparathyroid UK on google. If calcium is low and parathyroid is high look up the sane group. You should find your vit d is low too. Are you taking and calcium supplements?

[Glasgow22]

Yes I am taking both.

[Jubux]

See if you can get your 1.25D tested at the same time as the 25D that is normally done. Some people with MS are given more vitamin D in supplements than their bodies can take. 25D is measured because it is cheap to do, but 25D is changed into 1.25D by eg kidneys and some forms of inflammation and is what the body actually uses. 1.25D gives the true status of circulating vitamin D and too much can be as dangerous for bones as too little. (By testing only 25D, many people with inflammatory disease have been told that they are low in vitamin D and given supplementation when they don't need it or it will make matters worse.)

[Glasgow22 in reply to Jubux]

Thanks that is a possibility will ask to be tested.