Osteoporosis Drugs and Side Effects - anyone else struggling to find the right drug?

Rolia shot  next week. First one was in February and I had no reaction at all. I am also on prednisone (this didn’t cause my osteo,  but  it sure didn’t help!) . I haven’t come across anyone on forums yet that have reacted to Prolia. It seems to be that if you MUST take something, this is the one to take. As long as you realise once started there is no going back without risks of ending up with stress fractures. Best of luck with your decision. I’ll be interested to follow your progress. 

Hi Sarah..I have osteoporosis due I'm told from a parathyroid tumor..the calcium stays in your blood rather than going to the bones..

Ihad prolia injections every six months ..I had four in total..but the more I had, the more pain I was in..I got to a stage where I was really struggling with day to day living...the specialist said for me to not have the next one when due...

Six months later I had another dexa scan...no improvement was shown ..infact my T score had even got worse...

I've to go next week for a yearly Infusion of zoledronic acid...

I believe it's the same sort of drug as prolia(bisphosphonate)

I was told that I couldn't continue without treatment as the osteoporosis is severe...

I'm trying to be optimistic...

Because I had problems with prolia doesn't mean that you will...wishing you well Chris.

Unfortunately just today I've read a post on the healthunlocked forum by someone who took prolia for a few years (3?) and after she came off it, with greatly improved bone density, a few months later she suffered some vertebral fractures.  Don't take prolia unless you are prepared to stay on it for many years, possibly the rest of your life, especially as you can't take bisphosphonates which are recommended now when people stop prolia.  There is another possible treatment, but can only be taken for two years, teriparatide (forteo) which you could take for the two years, or which perhaps could be given as the bridging therapy after a course of denosumab (prolia).  I am assuming you are beyond being able to deal with this naturally, but by all means you should do what you can to give your bones the nutrition and appropriate exercise which contribute to their health whether you take a bone med or not.  All the best.

Starting a new dance/walk class to do more weight bearing exercise - the previous vertebrae break has always made exercise difficult. 

I will see my GP and a fantastic holistic therapist and see what we decide. 

I feel as tho the prospect of so much pain puts me off new medication at least until my kids are independent and I can downsize my home to something more manageable maybe. 

Feeling very fed up tonight, and very overwhelmed. Does anyone else feel very down with this condition sometimes?

Hi Sarah, You have described your spine scores as "terrible".  I really sympathise with you because I've been there myself. You're young at 50 and already had a fragile spine from past injuries. 

There is nothing wrong with taking your calcium and vitamin D etc. - in fact ti's important to do so - but neither these or walking, or dancing, or weight-bearing exercise, will go any way towards improving your bones to the extent that you seem to need.  You say  "the prospect of so much pain " puts you off new medication and you want to wait until your children are sorted and then you  can change your home to one more manageable. . . . Have you become depressed and are kind-of giving up? Please DON'T wait to improve your situation, start now!!

As Anhaga has said, there ARE medications that can help. Prolia is one that you mentioned that your GP spoke about and Forteo is the one Anhaga mentioned. Both are the recommended drugs for severe Osteoporosis - with Prolia being the preferred choice for those who can't tolerate the bisphosphonates (alendronate and risedronate). It is administered every 6 months by the GP.  Forteo is the only med. that promotes new bone growth and is self-administered by injection pen (like a diabetic) daily for 2 years. It has also been found to improve pain esp.in the spine area.  I've tried Forteo and had very good results with it - and no fractures. I have 2 friends taking Prolia with no problems- but everyone is different. 

However, a couple of  things jump out at me while reading your post, first - have you not seen a specialist?

An endocrinologist or a rheumatologist? This is where you need to start. A GP is not up-to-pace with Osteoporosis and it's treatments and your first one suggested alendronate, or just calcium alone when you couldn't tolerate it. 

Not very impressive. The second one had probably read up a bit on OP and came up with Prolia. A bit better. 

Next, if it were me, I'd pay money to a physiotherapist who specialises in OP and safe exercising  before I'd attend a holistic therapist. 

I'd leave the latter one until I'd settled on a course of treatment with medication (with regular reviews) and was doing the best for myself with good diet and appropriate exercise. 

Finally, please try and put your situation into perspective. OP is a condition that can be treated and  life can be good again - you could have been diagnosed with conditions that were a lot worse. 

Take care,  J