Just started romosozumab on Wednesday.

[Gjohnso]

It’s 2 shots a month, and the injection sites are sore - both thighs. Anyone else have experience with this?

I am in Florida and have 4 vertebrae fractures. I’m 61 and would love to hear from people struggling with fractures. I was 5’5” and am now 5’2”

[Sunseaandsand]

Hi, and welcome to the forum.

You will find it helful, interesting, and above all you will realize you are not alone.

The posts you read are not there to frighten others but to allow us to make informative choices which can at times be really difficult.

I am from the UK and like yourself have 4 spinal fractures, mine have all happened without trauma owing to having very low bone density.They are in T9 T11 L2 and L4.

How did ours happen and where about are they?

Do you know what your T scores are.

The fractures are very painfull and disabling, my last fracture which happened a year ago put the fear of god in me and has left me very disabled. Are you on anything for the pain?

Do you have any other problems in your back?

I have many other problems such as Osteoarthritis, spinal stenosis, bulging discs, the list goes on.

The hard thing is trying to work out why, I am 65 years of age , never smoked or drank being active and enjoyed food whilst maitaining a healthy weight.

The Treatment they have started you on was turned down twice in the uk but has now being approved to begin use in the Spring.

Like all the other bone treatments it carries risks.

With it still in trial we will not know of the true risks for some time.

You will hear from everone myself included that when the treatment ends it is vital that a different treatment takes place immediately.

Prolia has and is causing some terrible rebound effects, and is still in use.

Romoszumab as Heron has said has also been brought to us by the same company.

I have been under a good bone specialist team for 16 years now and have not tolerated the treatments well at all.

I have to be honest though and say that if I had been given a treatment and not suffered terrible side effects then I would have definitely continued it without a doubt.

I have had the treatments yet still had the fractures.

Romoszumab has shown in trials to have very positive results.

I do not think at present I would be consider a suitable candidate as I have an appointment due in a few weeks with a Cardiologist, I will need to see what the outcome of that will be.

I had been told in November that Romoszumab will be available in the Spring here and I would be a Candidate but this was when I saw the Bone Specialist.

Also I need to give it a lot of carefull thought.

So we shall see!!

[AnnieW55 in reply to Sunseaandsand]

Evenity, Romosozumab, is only taken for 1yr. So, as with a Prolia, a follow on is needed and a plan in place.

[Gjohnso in reply to AnnieW55]

That’s good to know. I don’t mind taking a follow-up drug. I am in so much pain and can barely walk.

[HeronNS in reply to Sunseaandsand]

You are aware that "Evenity" has a black box warning because of 30% increase of "cardiovascular events" over Alendronic Acid in the trials?

healthunlocked.com/boneheal...

[Sunseaandsand in reply to HeronNS]

Hi,

Yes I have been looking at the results from the trials.

Does not read very good news.

It works in a very similiar way to Prolia with the same side effects thrown in, and more.

The most serious being a risk of Cardiovascular events.

A number of years ago I was undergoing tests for the heart and it had been suggested prior to this that I take ? Sorry can't remeber the name but it also carries a risk of Cardio events.

Because of the tests I was undergoing the bone specialists decided it was not possibe for me to be given it.

It was in tablet form.

I actually have an appointment with a Cardiologist this afternoon, this is as a result of 2 episodes of chest pain in November and December last year which when taken to A&E tests showed my Troponin ( don't know if the spelling is correct) level to be raised.

I do not think I will be going onto Romszumab, not only because of the Risks of a Heart attack.

Also because I do not beleive enough trials have been done yet and I am not prepared to be used as part one.

My only option now is to have a half dose of Aldronic acid which my consultant has kindly agreed to ( this being because of my intolerance and my BMI only being 16)

At the moment I have to hold of any new meds or treatments as I need to find out just whats going on elswhere in my body.

[HeronNS in reply to Sunseaandsand]

You are very wise. I wish you well, and do let us know how things go for you. Best wishes.

[Sunseaandsand in reply to HeronNS]

Thank you.

I have to have a 24hr hour moniter and an echocardiogram.

Sometimes I really feel that over the years it's the Osteoporosis treatments that cause a whole lot of other problems with my general health.

I don't feel that enough effort has ever been put in to raise the awareness of how serious the disease Osteoporosis is.

It's ridiculous when you think about it that all anyone has ever been told is drink lots of milk the calcium is good for your bones!!!!!!

[HeronNS in reply to Sunseaandsand]

I agree. I think we should be told how to care for our bones the same way we get ongoing advice about diet, exercise, avoiding smoking, signs of stroke or heart attack. After all, our bones are what everything else hangs on!