Osteoporosis : Hi I’ve been diagnosed with... - Bone Health

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Osteoporosis

Qscrabble8
Qscrabble8
16 Replies

Hi

I’ve been diagnosed with osteoporosis of the spine. Zoledronic yearly infusion has been recommended for me. Has anyone had this treatment?. I’ve heard the side affects are awful ie: osteoncrosis of the jaw also fractures of the femur. I know most medications come with side affects, but these are making it very difficult for me to make up my mind. Would appreciate your comments.

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HeronNS

Just how serious are your t-score numbers and do you have any existing fractures? If your numbers are not terribly dire, and you do not have any fractures, you should be able to improve matters without resorting to medication. If you feel you really need some medical intervention then it's possible about two years of treatment will be helpful. You wouldn't want much more than that, though, because the serious side effects seem to occur after long term use when new bone is being laid over old bone. Personally I would never take medication, but this is a personal decision and what is right for me may not be right for you.

For a start you could read my account and do more research. You want to be really comfortable with whatever your decision is.

healthunlocked.com/pmrgcauk...

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Qscrabble8
Qscrabble8
in reply to HeronNS

Thank you for your reply. My T score is 2.9. I have tried Bisophonates which didn’t agree with me , had a small stomach bleed. I’m 72 (4’ 11, don’t want to lose any height !!! ) and reasonably fit apart from C.O.P.D. I’m always at the dentist with a broken tooth etc my teeth are very weak is another reason I’m sceptical if that make sense. I have read so many reports on these drugs, from here and the US. I think I’m leaning towards the natural options. And you’re right you need to be comfortable with decisions you make. And I know I would worry if I had the infusion what might happen in the future.

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HeronNS
HeronNS
in reply to Qscrabble8

All I know is my results were very good, and I have heard of others who have done just as well and from a worse starting place than me. But it does take a lot of willpower at the beginning. Now my bone-friendly behaviour is second nature and I'm hoping the next DXA scan (maybe this fall?) will be as encouraging as the last one, which was in 2016.

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Kaarina

I hope that you have a copy of your dexa scan so you can see for yourself what the report says. You are entitled to a copy.

Why were you sent for a dexa in the first instance? Loss of height, fracture?

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poemsgalore1

If you don't think Heron and Kaarina's way of treating their OP is for you, and still want to try Zoledronic Acid, I have had 2 annual infusions. First one I had no problems, 2nd one I had 5 days of aches in my hips and thighs, but no other problems. I think most of the bisphonates CAN cause the problems yu mentioned, but they are rare. Many people feel safer taking the natural route, it is a matter of personal choice. Good luck.

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Kaarina

Hi poemsgalore,

I have not got osteoporosis according to the new consultant I saw (as the other one left) and have just been discharged after over three years of attending appointments twice a year. That said my spine is in such a bad state that a reliable reading on a dexa is impossible to be taken from it, only from my hips and there is no OP in my hips. My degenerative changes and loss of over 5 inches in height is due to osteoarthritis, so I am now told and a curvature of the spine (which I have had for years). I am to have a dexa in two years time as my GP has been informed (he will arrange it) in writing about this. I shall not let him forget as I definitely will not! ;)

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poemsgalore1

good news Kaarina - I think.

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Kaarina

I have mixed feelings on this. My spine is in such bad shape and there are no options for me to choose from. Onl, if in the future another fracture or OP is found in my spine will I be offered any help ie with the offer of drugs. My spine can and probably will deteriorate further with osteoarthritis...… Of course I am happy I do not have OP in my hips but devastated that my spine shows such degenerative changes. I was on strontium ranelate until it was withdrawn. Now I am informed that even if I had OP the consultant would not offer me this drug again although it is back on the market as it is not on offer in the hospital where I would see a specialist. The offer would be prolia……… I will not take that as I have learned so much about it.

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HeronNS
HeronNS
in reply to Kaarina

I've lost at least two inches, and it must be from OA, and as you say there's not much that can be done. My physiotherapist has given me exercises to help keep the spine straight and slow down the inevitable compression. I do find that Nordic walking has given me much better posture, I can even note a deterioration as weather the last few weeks has prevented me from going out with the poles every two days as I used to. Can still walk, but picking my way cautiously over ice! But spring is coming and the poles are standing in a corner waiting for me!

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Kaarina
Kaarina
in reply to HeronNS

I do exercises every day and walk every day but not Nordic walking. I am on my feet most of the day too. Life is good but I would prefer to have my 5" in height back. That is impossible so I keep myself busy so that I do not think about things too much and do not look too much into the future either. Take each day as it comes and make the very best of it. I am very rarely down. :) Life could be much worse for me so I am grateful for what I still have. :) ;)

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poemsgalore1

Know what you mean Kaarina. I don't manage much exercise due to pain in my hip (osteoarthritis) and after 4 spinal fractures- possibly more - I'm 4 foot 8 when I used to be 5 foot 2. Makes it difficult to reach up for things.

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strongmouse
strongmouse
in reply to Kaarina

I had my second zolendronic infusion this year. The hospital have said they will do a DEXA scan next year and then review things. Unfortunately because of ill health I can't do a lot of exercise and I have quite a few food allergies and intolerance which add to the problem. My mother had severe osteoporosis, lost several inches in height, had a lot of spine and back pain and broke her hip. So I am keen to do all I can to prevent the osteoporosis getting worse.

I had a dental check up before starting and go every six months. As I understand it many of the problems with the jaw are in patients who have diseases like Pagets and are on long term injections. There are no definite good answers, but it is good that you are weighing up your options and what works for you.

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Rea1234

nutes ago

Hi

I understand totally. I was in your position a year ago and initially decided not to have the Infusion. However after talking it through with the dept who was to administer this I went ahead and had my first infusion. I felt tired for a few days but have had no noticeable problems since. Will have another dexa scan at the end of this year - so will see if there is any improvement. I think it is a personal choice after weighing up the possible outcomes either way. I have had no further fractures to date.

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yogabonnie

I have osteoporosis of the spine and i IMPROVED my t+score this year without meds by doing heel drops (and tooK tap dancing) google heel drops for osteoporosis. Easy and effective for the spine. what were your numbers. I am -2.7and wound NEVER consider the medication. good luck to you. It's all confusing ! But Calcium and K27andD3 and weigh bearing exercise works!

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Qscrabble8

Thank you for you’re reply. My t-score is 2.9 a bit higher than yours. It’s very difficult to know what to do. From reading all the comments, I think I will up the excercise and include K2 vitamin, I already take calcium and vitamin D. I will look up the heel drop exercise. Thanks again.

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