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I am afraid of trying Tymlos and other drugs due to side effects

Posted by mkav2023 @mkav2023, May 7, 2023

How do others handle the fear of side effects, as well as the very real side effects, from Tymlos and other osteoporosis drugs?

I am 68, physically active, and feel fine with no fracture history. When I began developing osteopenia years ago, I was put on Fosomax and large amounts of calcium and D for about five years with no positive results, and sure enough, my osteopenia became osteoporosis.

My doctor now is recommending Tymlos due to my worsening Dexascan scores (worse T-score is -3.3 spine, and other T-scores are in -3.0 range). I have read a great deal (pro and con) about Tymlos and its side effects, and I know that even if Tymlos helps, after two years on Tymlos, then I have to go on another drug. I believe the odds are I will encounter a drug sooner or later with serious side effects that will drastically hurt my quality of life.

Any advice from those of you who have been on Tymlos and other drugs with side effects is greatly appreciated. Thank you!

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laujodrik | @laujodrik | 14 hours ago
In reply to @tkdesign "I feel for you. I have severe osteoporosis in my 50s with no found cause yet...I..." + (show)
@tkdesign

I feel for you. I have severe osteoporosis in my 50s with no found cause yet...I have tried all the bone building drugs and had awful side effects. I couldn't make it past a month. I think my body just has extreme immune responses to drugs overall. I'm so scared of fractures but no idea what to do.

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I’m so sorry to hear. You’re so young it must be beyond frustrating. I would find a dr of physical therapy that specializes in osteoporosis. I’ve been seeing one for a month and he’s been training me. Being on Prolia I’m not sure how much help it will be. I do feel stronger in my core though. Everything I read once you’re on Prolia the absorption of calcium is greatly reduced. I’m not sure what meds you’ve been on. There are so many. Are you seeing a regular MD or one that specializes in osteoporosis? Good luck and don’t give up.

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tkdesign | @tkdesign | 6 hours ago
In reply to @laujodrik "I’m so sorry to hear. You’re so young it must be beyond frustrating. I would find..." + (show)
@laujodrik

I’m so sorry to hear. You’re so young it must be beyond frustrating. I would find a dr of physical therapy that specializes in osteoporosis. I’ve been seeing one for a month and he’s been training me. Being on Prolia I’m not sure how much help it will be. I do feel stronger in my core though. Everything I read once you’re on Prolia the absorption of calcium is greatly reduced. I’m not sure what meds you’ve been on. There are so many. Are you seeing a regular MD or one that specializes in osteoporosis? Good luck and don’t give up.

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Yes I have an endocrinologist that prescribed me tymlos, but already after a month i'm having some awful neurological side effects. This was kind of my last straw. I've concluded my body treats pharma like an allergen...nearly everything i try it's like a brick hits me. I'm in PT already recovering from surgery last year, so am in chronic pain already, hard to walk, hard to lift weight...I've had these issues over 10 years. It caused muscle wasting and so I was already at a disadvantage. I'm not sure I have much hope at this point.

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