After signing everything but the official secrets act , I finally have some figures to share . T.Score hip -4.3 spine -4.9 which I'm guessing is not too good . The offer on the table is six monthly Prolia injections . Apparently I have a spinal fracture which I'm guessing I have had some time , and my neck , which is still very painfu! , under the banner of arthritis . I am so afraid as my neck is dropping forward at what to me is an alarming rate and my back is curving too. Is it possible that taking this drug will stop the advance of this ? I have read a lot about it and realise how awful it is but feel as though I'm between a rock and a hard place and I am the only one who can make the decision . Pp
T scores at last : After signing... - Bone Health and O...
T scores at last
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Pinkpeony
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This is what you need to know about Prolia. It does indeed have a very good record for healing the bones and improving density, particularly in the spine. The down side is it affects the immune system so depending on any other health issues you have you may wish to take that into account. If you anticipate any dental procedures they should be done before you start the medication. The most serious issue you will already know about I expect. If and when you discontinue Prolia you must start another bone med almost right away to prevent rebound osteoporosis.
It would be worth considering carefully other side effects people have experienced after several injections. These may not be very common, and there must be info about that out there somewhere.
Like all these bone meds you should have a complete work up if you haven't already to rule out any secondary causes of osteoporosis and to make sure your vitamin D level is good.
Whatever you do, please also do all the natural things which will help your bones to regain some density and which will have only one side effect - generally improved health.
On the American bone health forum there has been a recent discussion about the benefits of Forteo (also known as Forsteo) (teriparatide) which is only approved for two years. The individual who has done well on this drug has followed up her two years on Forteo with treatment using Reclast, a bisphosphonate as, like Prolia but maybe not so dire, there is a rebound effect at the end. Forteo has the benefit that it encourages formation of new bone, whereas the other meds damp down the activity of "bone remodelling" where old bone is removed. (The discussion is included in this thread, comments by Lawdog: healthunlocked.com/american...
Good luck with your decision. It is a difficult one.
If you can, seek the help of a physiotherapist experienced in osteoarthritis who can prescribe some exercises to strengthen the muscles on either side of your spine and help to keep you upright. Nordic walking (with poles) can also help you maintain upright posture.
Just a quick question Heron . I've been lazing in bed for an hour reading your reply and also old posts . I've not noticed any readings like mine . Are they incredibly high (or low ) however you read it . The consultant was extremely laid back about it , unless he was aware that I already knew about the possible side effects .
You must get sick of repeating the same thing . Thank you . I am so grateful . Pp
I have to say I believe reading of -4 must be serious. "They" are often quick to prescribe meds for readings like mine, which were only -2 at worst, although meds shouldn't even be considered until worse than -2.5 which is the official line at which osteoporosis is defined.
There are so many things to consider, not least of which is your overall health. If you are strong, reasonably fit and have a good sense of balance and a healthy weight (not too thin) and not taking any meds which can affect bones adversely, your risk factors go down. Falling is the biggest fracture risk, not bone density. But you have noted issues with your spine and advice about that is way beyond what I know. You would get more informed advice from the ROS.
Heron, I have never been well since RAI treatment to zap my thyroid over seven years ago. The only thing that worked eventually was self medicating NDT.. I am very underweight, and the fall in February which has affected my neck has knocked me for six. I will ring the ROS and seek their advice. Thank you Pp
Excuse my ignorance, what's NDT?
Is it possible to speak to another specialist, to seek a second opinion? I don't know where you are based so I don't know if that is a reality but, for example, if you could identify a hospital attached to a university, meaning the doctors are often actively engaged in research and sometimes have more knowledge or experience in other approaches beyond the first line treatments such as Prolia, and a specific specialist in endocrinology/bone issues, you could ask to be referred there to speak to someone. At the very least, another specialist might be able to spend time talking through Prolia with you so you are armed with all the facts. Good luck!
Thank you . I live in the North East of England and there is a fantastic research facility in Newcastle . Thanks for your reply . I will look into it . Pp
I had a quick search for you - gosh, they don't make it easy! If you look at this page, I think they would class it under Older People's Medicine (rather than Endrocrinology - my specialist, here in the Netherlands, at the local research hospital, sits under Endocrinilogy but it I think it must be different) newcastle-hospitals.org.uk/... and you can look at their research interests - Dr Richard Quinton in Endocrinology might be worth contacting and I'd ring up the dept of older people's medicine and speak to someone about who would be best to speak to. Years ago, when I lived in London and wanted a formal clinical diagnosis of OCD, I contacted the specialist direct to see if he would see me - he said yes and then I just had to give my GP his name for a direct referral. Hopefully this will work for you!
Hi Pinkpeony
My reading for spine is -3.7 and I’m just 44. I have researched a drug that has only just received FDA approval and has better results in trial phase than anything else. It’s called evenity. Please look it up. Keep up everything else. I’m trying to find a rheumatologist in the US who will prescribe it and will be travelling there to get it if that is possible. I will try and get reimbursed on insurance. If not I’ll sell a kidney (joke) but as my spine is serious business and I have very young children I cannot take this lightly. X
Hi Pinkpeony! Sorry to see your low numbers. I have the same numbers, but am 58. Still too young. I have been prescribed Prolia, but I'm so afraid to start it. Money is an object, but within reason. Let us know what you find out. We're all in this together I guess.
Spendthrift , I'm sorry for the late reply. I'm afraid I can be of no help to you . My resolve has vanished in weeks of pain from a fall that has twisted my neck ( nothing to do with osteoporosis apparently ) and left me with a deep depression. Advice when I spoke to the ROS nurse was , with those scores you probably need something , and the same on the bone site . I said I would have the Prolia injection but have put it off twice . I am so scared of it and have no desire to add to the way I am feeling . I can only say that you are quite a bit younger than me and hopefully have some time to improve with advice from the amazing people on the site.
Best Wishes Pp
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