Eileen/annual bone building injection, anyinfo welcome please
Posted , 6 users are following.
Have just returned from doctor`s...my dexa results showed Osteopenia, she said the measurement was`nt through, but that is what was advised. In the past three years on pred, have tried daily, weekly, monthly (wretched Bonviva!) and because of having Fibromyagia, could not tolerate these at all. Can just about tolerate Adcal, but doctor says this is not enough. The doctor is referring me to Rheumy, with a view to having a once yearly injection maybe. I am concerned that if I can`t tolerate that....how long will the affects be, once I`ve had it!...if you know what I mean. Is anyone else having this injection? Thanks for any input
0 likes, 29 replies
pat38625 linda17563
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lodgerUK_NE linda17563
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Yes, two or three people have that yearly injection' Densumab' and you are so lucky your GP has not said Alendronic Acid.
Look at the National Osteoporsis website for more information and also on the Osteo thread on this site.
linda17563 lodgerUK_NE
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EileenH linda17563
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Google the National Osteoporosis Society and call their helpline. Someone on another forum said they were wonderfully helpful with their advice and explanation. Make sure you have your facts available - some doctors are very reticent about going to the expensive end of the spectrum and one lady was first given AA when it was totally contraindicated with her history of gastric bleeds and her rheumy is STILL trying to give her that. When she had a hissy fit the doc then offered s/ranelate - which she can't have because of DVTs and cardiac problems in the close family history. Some of them simply DON'T put their brains in gear and read the data sheet in front of them but can get quite stroppy when you say no. Know your facts and your family history - just in case.
linda17563 EileenH
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EileenH linda17563
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I have osteopenia - you aren't going to crumble in a heap for waiting for a few months! No-one is saying I need ANYTHING with osteopenia, that is just a stage on the way and most women our age with have bits that are osteopeneic.There isn't much evidence other than very clever marketing that it makes any difference to fracture risk. Women who are osteoporitic don't have broken bones, women who have normal bone density can break a hip. There are other far more significant risk factors that can be eliminated with NO side effects:
Good muscle tone to avoid being wobbly - maybe do tai chi
Good lighting in dark areas, especially with steps
No rugs to slide on hard floors or trip over
Remove cables and other trailing things
Wear shoes not sloppy slippers
Maintain vit D levels
Keep hydrated
Be careful when standing up if you feel dizzy at all.
No side effects - guaranteed!
linda17563 EileenH
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As for the 15mg....was on 20mg just before xmas, after I posted on here about blurred vision, was sent by doctor to eye clinic, who put me from 7mg,( pain and fatigue as well had returned)....to 20mg, have reduced down since, SLOWLY might I add, to 15mg, but feel awful.....it was coincidental having the Dexa test. Doctor said today to keep a little longer on 15mg....think she`s leaving it now to the Rheumy to sort.....but in the meantime??
EileenH linda17563
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linda17563 EileenH
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EileenH linda17563
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Have I asked before - where are you?
linda17563 EileenH
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linda17563 EileenH
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EileenH linda17563
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PMR is just the name for a set of symptoms with a lot of different causes which need to be ruled out BEFORE deciding on PMR and a moderate dose of pred having a fairly magic effect sort of confirms that.
Not wanting to scare you but there are a few cancers that cause it too and they MUST be ruled out, especially when the symptoms continue or get worse when on pred. You should have had about a 70% improvement in the symptoms you think might not be fibro if it is PMR. It doesn't sound as if you have. There are other less nasty causes - but I'm rather sceptical that it is PMR to be honest. I could well be wrong - but if you are getting worse not better you need another opinion.
Go back to the doctor - and tell them you want to be sent to hospital for an expert to do some tests. And now, not in months.
linda17563 EileenH
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.Just had a letter from the hospital, I have regular colonoscopies, because of my mother dying of bowel cancer, they now don`t deem it necessary!!
I somehow think money has come into it...yet, I am the age when they say they should be done!.......our poor NHS where is it heading??
linda17563 EileenH
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EileenH linda17563
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How can you find out? I don't know. Who is it who will give it you? Not that I would allow anyone to give me anything without knowing what it is - it's called informed consent ...
bebe82419 linda17563
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Thanks Bebe
EileenH bebe82419
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Why not start a new thread and ask your question.
linda17563 bebe82419
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