What decision to make regarding osteoporosis

Posted by bettersleep68 @bettersleep68, Mar 6, 2023

I am going for my dexa in a few weeks..I am concerned it will show more bone loss..I am scared to start any of those medications and side effects..anyone else feel like this ...maybe just whatever will be ..

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@candy209

Hi Sammy,
I am so sorry to hear that about the Prolia.
That’s amazing you had such great gains with Evinity. I worry about what’s next as well. I still have not started anything by due to some issues with my jaw. They were afraid to put me on evinity because of a very small risk of jaw issues so now they want me on tymlos. That worries me because my hips are also bad and from what I understand evinity does a much better job building spine and hips. Are you a slight built person? I have a very small frame and very small wrists and bones however I am almost 5’8”.
Have you seen Windyshores post about reclast. She is so lucky to have a good doctor who is allowing her to try a very small test dose if reclast.
Please let me know how you are doing.
Best wishes for your next step in this process.
Candy

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I was told Tymlos is better for hips than Forteo. I had a decent gain in hips- 6%?

@cabdy209 just want to make the point again that my doc is not "letting me" do a test dose. He is basically requesting that I do that due to other health issues. Most people do fine with Reclast and doing hydration, tylenol and slow infusion is supposed to be helpful. Good luck!

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@candy209

Hi Sammy,
I am so sorry to hear that about the Prolia.
That’s amazing you had such great gains with Evinity. I worry about what’s next as well. I still have not started anything by due to some issues with my jaw. They were afraid to put me on evinity because of a very small risk of jaw issues so now they want me on tymlos. That worries me because my hips are also bad and from what I understand evinity does a much better job building spine and hips. Are you a slight built person? I have a very small frame and very small wrists and bones however I am almost 5’8”.
Have you seen Windyshores post about reclast. She is so lucky to have a good doctor who is allowing her to try a very small test dose if reclast.
Please let me know how you are doing.
Best wishes for your next step in this process.
Candy

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Hi Candy
..looks like I'm going to try 3 month infusion of boniva....if I have a bad reaction I'm going on hormones..ie estrogen...You will do great on evenity...I don't trust any of the other drugs.. ...keep me posted...

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@windyshores

I was told Tymlos is better for hips than Forteo. I had a decent gain in hips- 6%?

@cabdy209 just want to make the point again that my doc is not "letting me" do a test dose. He is basically requesting that I do that due to other health issues. Most people do fine with Reclast and doing hydration, tylenol and slow infusion is supposed to be helpful. Good luck!

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Thank you

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@dianestanley

I am amazed that you had weightlifted for all of those years and got Osteoporosis. I exercised through my 20's and rollerskated until I was 48. Many of those years were 12.5 hours skating per week. I have seen more people who were eating and exercising right but still had bone loss. I will be done with my Evenity shots in late July. I should have a scan done soon after that and hopefully I can get surgery so that I can fix my back. I can't stand over 5 minsat a time.

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Diane Stanley I had no idea I had osteoporosis..I am 75 always very active bike riding pickleball softball yet my back for years would get so tired especially lower back area . Finally got an MRI my ortho MD very dismissive yet said I need surgery ASAP due to arthritis spinal chips … I believed her …long story short osteoporosis she had a mishap in my surgery …on 12/12\23 recovery was awful it was an internist that brought up osteoporosis….inwas given IV Reclast 5
Mg while recovering from back surgery …going thru PT Reclast made me very sick my bones hurt my body is so painful I talked to the nurse twice …her suggestion was pain pills and basic IV. I was a total idiot I thought this medication. Was safe to help my back …yep idiot ! For days I felt I was dying and so much pain !! Then I got on this website thank you as I am alive slow scared what is next …PT had to quit coming as my joint pain was a 10 out of 10 with horrible headaches ….i am college educated what the hell happened ? To trusting ? Using a walker full time Norco 7.5mg every 4-6 hours decided I needed to drink more water not scheduled t ok see. My doctor for 3 months …what do I do n?? Am I dying ‘? Called the ER called pharmacy I cannot eat this has been a nightmare any suggestions would be so appreciated! Normajean. please help me !!

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I marched right in took scan had back surgery no worries of side effects …I was so wrong !! Was not informed enough on alternate plan or what I was even doing to my body ! Surgery went poorly Reclast as nitemare I have been Sick for months the headaches. And joint pain are the worst . I cannot drive on Norco for pain and just realized tonite I may never play tennis again or bike ride with grands as my headaches and pain is continuing since Reclast..I have lost 30
Lbs and feel like I am dying please help ! I am 75 not ready to die yet headache is so severe! Normajean

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Tymlos is a good medicine for healing bones (Forteo too). How many Reclasts have you had? Since you are not reacting well to Reclast, insurance should cover Tymlos. Reclast affects effectiveness of these other meds somewhat but they will still be quite effective. Hope you can switch.

Reclast lasts awhile in the body. I hope you stop. Right now. When was your last infusion? Does your doc know how much suffering it is causing? Or is it the surgery that is causing your suffering? I am so sorry!

Are you saying the surgeon operated without knowing you had osteoporosis?

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@windyshores

Tymlos is a good medicine for healing bones (Forteo too). How many Reclasts have you had? Since you are not reacting well to Reclast, insurance should cover Tymlos. Reclast affects effectiveness of these other meds somewhat but they will still be quite effective. Hope you can switch.

Reclast lasts awhile in the body. I hope you stop. Right now. When was your last infusion? Does your doc know how much suffering it is causing? Or is it the surgery that is causing your suffering? I am so sorry!

Are you saying the surgeon operated without knowing you had osteoporosis?

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My surgeon never discussed I had osteoporosis it was a Rheumatoid Doctor I had been referred to by my GP due to constant lower back pain. Surgeon said only surgery would help .a month later saw Rheumatoid Doc which she advised me I had Osteoporosis and ordered Reclast …I was still recovering from surgery then Reclast infusion I feel I am starting over recovering from back surgery ..as headaches with deep bone pain fatigue hit 12 hours after infusion, I had to stop physical therapy as the bone pain in joints would not allow physical therapy. Has anyone gone thru this feeling so much pain after Reclast infusion that I received 12 days ago. I am also 34 days post laminectomy of my back which I realize all this was my choice yet was advised my pain level would be much less …it’s not it’s worse ! Nj

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@nhubbard1

My surgeon never discussed I had osteoporosis it was a Rheumatoid Doctor I had been referred to by my GP due to constant lower back pain. Surgeon said only surgery would help .a month later saw Rheumatoid Doc which she advised me I had Osteoporosis and ordered Reclast …I was still recovering from surgery then Reclast infusion I feel I am starting over recovering from back surgery ..as headaches with deep bone pain fatigue hit 12 hours after infusion, I had to stop physical therapy as the bone pain in joints would not allow physical therapy. Has anyone gone thru this feeling so much pain after Reclast infusion that I received 12 days ago. I am also 34 days post laminectomy of my back which I realize all this was my choice yet was advised my pain level would be much less …it’s not it’s worse ! Nj

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I hope the Reclast effects settle down and also so sorry that the surgery has caused problems.

My PT only does massage (and ultrasound), no exercises. I wonder if you can find one who is good at massage.

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@windyshores

@baguette and @candy209 Just to clarify: Dr. McCormick's book is on holistic approaches ("Whole Body Approaches to Osteoporosis") but he advocates for medications when needed and used them himself.

@candy209 I have never heard of osteoporosis meds causing bleeding during dental procedures. Interesting. Necrosis of the jaw is often mentioned as a risk though it happens more with cancer patients on high doses.

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My mother got necrosis of the jaw after a decade on fosamax. A specialist dentist was able to help her. Her GP had apparently never heard of it.

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@freckle1

My mother got necrosis of the jaw after a decade on fosamax. A specialist dentist was able to help her. Her GP had apparently never heard of it.

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Ten years is too long on Fosamax! So sorry for your mother's experience. Did she have any med breaks/holidays?

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