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I am afraid of trying Tymlos and other drugs due to side effects
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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Mouna160, windyshores has retired. She is irreplaceable, but she has left us with the wealth of her experience. I remember that she posted about her Tymlos finale. I sort of remember that she didn't get to 8 clicks but slowly made it to 7 and felt like it was successful. But before you believe me, I'll try to find that post.
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1 ReactionNorma found this for us
njhornung | @normahorn | Nov 17, 2023
WindyShores wrote:
"I rarely did a full dose of Tymlos and still had huge gains for spine and good gains for hip. I like adjustable meds! I asked about having one shot of Evenity versus two for my first but no go."
When considering Evenity, I asked one doctor for her opinion mentioning I was being denied half dosage as a trial case. She reminded me that I could always say stop and leave after the injection of the first syringe. I would prefer to be upfront but it is good to be reminded that we have control.
@flowers62
I’m so sorry to hear that.
I am going through the same thing. I call it a catch 22. The things that are supposed to help me are hurting me. That goes for my other conditions too.
Hope we can stay in touch and try to figure this out. take care
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3 Reactions@punkie1214 Would love to stay in touch and hear how you are managing your osteoporosis.
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1 Reaction@flowers62
Thanks!
@gently Hello,
Is following Tymlos with Evenity a common approach? I was thinking about doing the same but all recommendations are either prolia or reclast after tymlos and i don’t want to do either infusion.
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1 ReactionI found this company in Edina MN called Hypercharge Health. I don't live in MN anymore, but frequently travel there to see mom and friends. They work with osteoporosis, plus many other ailments. So far out of all the on-line programs I've found, this one seems to be the most promising. I'm going to have a consult with them soon to find out more. They don't take insurance, but do take FSA & HSA, or you can submit out-of-network claim. They are doctors, not just any person doing a start-up company and trying to sell you supplements, etc. I'll update this post with further details.
FYI. I asked my PCP to order a P1NP & CTX and they didn't know that this is a blood test. They clearly shouldn't be care providers for osteoporosis!
I'm frustrated because my PCP didn't even know anything about Tymlos drug! Just prescribed be Evenity and really no clue about that drug either. Guess it's time to find a new PCP again. It's hard to find a good one. If anyone lives in SW Florida and has recommendations please share.
@hazell
PCP can't be expected to know everything about all medical diagnoses. Endocrinologists or rheumatologists may be a better direction but you have to dig to find out if they are trained and experienced in treating osteoporosis.
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