Lost height

Posted by bettersleep68 @bettersleep68, May 13 8:34pm

I have lost inches since having 3 kioplasty for fractured vertebrae..I have severe osteoporosis and it does change your body when you loose height..anyone been through this or have a suggestion what to do...in pain all the time..back pain...

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Profile picture for Jefesitachica @npolanco

@ess77 yes me at 80 definitely value peace. I had read there could be issues with teeth extractions when taking alendronate but didn’t give it importance. Eight years have gone by since I stopped alendronate and now I need molar extraction . I was informed CTX has to be 200 or better and there is nothing I can do to increase from 144 meanwhile deal with pain and take Tylenol.. I agree with @cathyf31 cathyf31 I don’t want to deal with prospect of wheelchair or nursing home . I may be wrong but I don’t think medications out there cure osteoporosis but just postponing nursing home or wheelchair

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@npolanco Who informed you that your CTX has to be 200 or better to extract a molar?

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Profile picture for Justin McClanahan, Moderator @JustinMcClanahan

Hi @grantwriter,

It is important to consider that side effects are not experienced by everyone who takes a medication. While osteoporosis medications can have some big side effects, the number of people they effect may not be as large as what an online community can imply. This is not to diminish those who experience the side effects - it is just to point out that typically members who have had great experiences tend to post a great deal less than those who have unfortunately experienced the negative side effects of an osteoporosis medication.

Did your provider mention how long it would take to see improvement or was the goal to maintain your bone density at the level it currently is to help ward off more fractures moving forward? Have you experienced any side effects?

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@JustinMcClanahan I have to take levothyroxine since my thyroid was killed with radioactive iodine back in 2010. I am petite and short and have lost only about 1 inch of height and have taken Fosemax several years, then Boniva, and now I have had a year of Evenity infusions. I am supposed to take Reclast now to maintain the gains I got on my DEXA from taking the Evenity. I am scared of the side effects of Reclast. If someone has a thyroid condition could that mean I might have side effects. I didn't have any side effects from Evenity but I am hearing about the flu symptoms, having to be hydrated and taking Tylenol. This is scary. I am 78 and am otherwise healthy. I have a new grandson, so I want to be able to hold him. I exercise and take Calcium and other supplements to help my bones.

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@cecliabaker and all...How great you are in good health other than osteoporosis. I suffer frofrom multiple autoimmune diseases, with regular steroid use over decades to put flares in remission. And a bunch of other stuff. So, medications and side accents are a regular concern for me. My body reacts to new chemicals, so I frequently deal with reactions. I do a lot of research on each drug I consider. I have open, frank discussions with every doctor about my diagnosis and treatments. I learned years ago I must be my own advocate. I am in control of my health care and must make informed, logical, clear decisions. My doctors at Mayo are wonderful and we are indeed a team.
That said, it is tough. Exhausting. Difficult. And, at times, challenging to do the work as you deal with illnesses. But, I take a break, zone out on a movie or meditation, then re-focus. Noone else will do this, so I better!
Ah, the Reclast infusions.
3 years ago, I agreed with my doctor to have the 1st of 2 Reclast IV infusions, after my usual questions and research. Yep! Had every side effects the medication listed. But, no allergic reactions or abnormal issues. I was a very sick woman for about a week. Alone in my condo, in screaming pain, nausea, fever, headache, and more. I told myself throughout those days this is temporary. It will pass. The doc says its not abnormal. This is helping me... I 'll be less likely to die from a fall and broken hip, or have another broken vertebrae, so it is worth it. I can make it since it's going to end and I'll be better!

It did pass. I have fallen since, a couple of serious falls that easily could have cause breakage and more disability. They didn't.

I thonk it was wise to have the infusion. BUT... I did and will not have a 2nd one! Done! I'm thankful for the benefits, but that's it. No more. Won't put my body or spirit through that again. And, I now have serious muscle issues to handle, so I move forward.

Hope this helps you a bit. Yes, glad I did it. Do it a 2nd time? Nope!

And, no dental work for a years after the infusion

Blessings. I pray you do well as you walk this crazy journey... Elizabeth

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So sorry that you’re going through this. I had that surgery in the Spring of 2023. At the time I don’t believe they knew how fragile my bones were and as a result more fractures (compression) occurred. Lost 4” total by the Fall - this year my insides seem to have settled in and my stomach definitely doesn’t protrude as much. Walking has helped me and using a heating pad brings some relief from pain. For lower back pain. It was helpful to walk backwards - if stuck inside you can walk forward then backwards over and over - while listening to music or watching a program on the TV. There are pt exercises you can do as well but you would want to have a physical therapist who understands your condition so that they don’t cause more harm than good. It took almost a year to get to manageable pain but these past two years have been so much better. I’m able to be more active since having PT and I continue to use some of the exercises at home to help maintain what I’ve gained in mobility, strength, and pain relief. Praying for you. 🙏🏼

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Profile picture for rjd @rjd

@npolanco Who informed you that your CTX has to be 200 or better to extract a molar?

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@rjd thank you for your message. I am enrolled in Medicare Advantage Plan . PCP dentist at clinic información me they will not do anything until the CTX is 200

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