I am newly diagnosed with osteo whate... - Bone Health and O...

Bone Health and Osteoporosis UK

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I am newly diagnosed with osteo whatever! I took aledronate sod 70mg. I was totally allergic to it. Many side effects. My dr prescribed

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prolia. Everything is in limbo now because of coivd-19 and the NY city and the state of emergency. I say you guys & girls had terrible side effects. I just kindda quickly glance over it. Hope you will share ur thoughts and experiences with me. Thanks

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Prolia

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14 Replies

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HeronNS5 years ago

Could you give us a bit more information about your actual condition? Do you know your t-scores for example? Have you had any "fragility" fractures? Are you in otherwise good health?

• in reply toHeronNS5 years ago

I don't know how to answer that she told me that my hip bone are thinning and my bone in general. I would have to loo at my files on line. How about you. What are you or have you been on?

HeronNS• in reply to5 years ago

My doctor was mistaken when I had my first DXA scan and I didn't actually have osteoporosis. You can read all about it here: healthunlocked.com/pmrgcauk...

• in reply toHeronNS5 years ago

I don't know I think I have i tbc she told me I was borderline 2 years ago with thinning of boneand told me it was normal since I was 67 at the time.

HeronNS• in reply to5 years ago

It is important to know your t-score. It's not a perfect tool but the best we have. The arbitrarily drawn line separating "bone thinning" from "osteoporosis" is a t-score of -2.5. Even if you have gone slightly further over the line you may well be able to improve your bone density through following a plan similar to what I describe in my osteoporosis journey linked above. I improved my bone density from -2 to -1.6 in one year and they no longer recommend drugs. I never took any drugs.

• in reply toHeronNS5 years ago

I have to research it. I'll get back to you.

• in reply toHeronNS5 years ago

They didn't give any specifics or specification in their report, I asked my general md and she couldn't answer the questions.

HeronNS• in reply to5 years ago

What happened with me was I was given the same "summary" my doctor got which said I had low bone mass and because of several risk factors they recommended alendronic acid.

I had done quite a lot of reading by the time I got even the summary so I was determined to find out my t-score. In the end the easiest thing would have been for my doctor to have requested the full report, but I didn't learn that until later and apparently she didn't know either. I finally managed, through asking around, to find out who to call. I had begun to think I'd have to file a freedom of information request to have access to my own medical information.

I was talking on the phone to the woman who had access to the reports. She said she couldn't tell me becaue of privacy concerns. I burst into laughter and said "But I'm the patient!". She still had to go away and ask someone else's permission to release my t-score to me. A few hours later she called back and told me my t-score was -2, which of course meant I didn't have osteoporosis after all!

It took a while for me to get this information, I had to be persistent. But it was worth it for me. I dont think anyone should be prescribed any bone medication unless they have all the information they need. This includes not only your own t-score, or scores as they measure different areas (the key one here seems to be the femoral neck but I do have scores for my spine) but you also should be completely informed about all the potential side effects, some of which can be managed but others can be life altering and not in a good way.

Doctors don't know much about treating osteoporosis without medication, and who can blame them, it's not in their curriculum. But many people are managing now, I am certainly not alone in being able to improve my t-score this way. I know that changes I made regarding diet and exercise will have to be followed for the rest of my life, but once the habit is formed it's easy. The only side effect from the natural way of treating osteoporosis is overall improved health!

I am not a medical professional. If you have had a genuine fragility fracture (not a fracture caused by trauma), then all bets are off and I would not venture to advise you. Other than to say no matter what bone med you choose in the end, if you decide to go that route, also do all the natural things.

• in reply toHeronNS5 years ago

Your information was very useful. Should I call the drs. The place that took the bone exams? OMG! I also have MS and high cholesterol that I manage through a tough diet. I am not to good on exercises lately.

HeronNS• in reply to5 years ago

Thing about the bones is, it's not like an acute infection or a cardio issue. You can take your time to think about things and it may be that it all becomes a bit clearer over the next day or two, and you'll decide exactly what you need to know from your doctor.

Did you have a chance to read my story, linked above in an earlier reply?

• in reply toHeronNS5 years ago

No, I gonna to have to read it. Thanks.

Blueskys1115 years ago

Prolia, exgeva and zumeta have terrible long term forever side effects. I was given 3 infusions of zumeta and 12 shots of exgeva. My bones are destroyed. My teeth are abscesses and my jaw is painful. I have terrible bone pain. Constantly on antibiotics. I’m just miserable. I could go on and on. Please don’t take these bone strengtheners. They change your bones forever. No going back.

• in reply toBlueskys1115 years ago

Than u for taking time to answer me. OMG what r you dong about osteoporosis nothing?

Blueskys111• in reply to5 years ago

Nothing but being very cautious not to fall. Doctor wants to put me on phosomax pill. I refused. I have no quality of life now and don’t want to make things worse

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