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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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lightlifts | @lightlifts | Sep 30 4:45pm
In reply to @gently "@lightlifts, I completely understand. The trouble is that you'll lose bone mineral content. Inside of two..." + (show)
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@lightlifts, I completely understand. The trouble is that you'll lose bone mineral content. Inside of two years you'll be about where you were when you started Tymlos. Your bone will still have more resilience. The bone that you keep will be good bone.
You might track the loss with bone markers.
Technically Evenity is a double injection not an infusion, and maybe not advisable for you. I don't know how much workability you'd have with the oral bisphosphonates, if you've tried a lower dose or a weekly dose, a very low dose with curcumin. https://pmc.ncbi.nlm.nih.gov/articles/PMC10839592/
You might consider Evista (raloxifene)

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@gently ty. No I can't go the oral route. I'll ask about Evenity. Evista...more hot flashes. It's a problem
TY for caring.

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loriesco | @loriesco | Oct 1 4:50pm

@mkav2023 My advice is to DO IT. I am finishing up my last month of TYMLOS!!! Two years flew by. It wasn't without the side effects the first 2 or 3 months so we titrated up slowly and I changed from morning injection to nighttime. I'm THRILLED I stuck with it as my numbers are super great this year! Trick is to find a nurse's aid to your doctor who will have some periodic visits to support and navigate the hiccups. Remember ---- you can always GIVE UP after you can say you tried your best. But if you don't try - you are correct, your quality of life will go downhill. It was very cool to see my bones WHITER in the xray last month in the doctors office, being MORE dense! Yay. Of course, this is a great support group here.

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hlp123 | @hlp123 | 3 days ago

I am about to start four clicks. Please send me any advise that may help me. I have not had any trouble with three clicks. But had rib fractures and sternal fractures before. had one year of prolia and one injection of reclast in 2020 and 2021 just started tymlos in Septembet 2026. need support and advise.
Thank you

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agnes01 | @agnes01 | 2 days ago
In reply to @hlp123 "I am about to start four clicks. Please send me any advise that may help me...." + (show)
Profile picture for hlp123 @hlp123

I am about to start four clicks. Please send me any advise that may help me. I have not had any trouble with three clicks. But had rib fractures and sternal fractures before. had one year of prolia and one injection of reclast in 2020 and 2021 just started tymlos in Septembet 2026. need support and advise.
Thank you

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@hlp123
Hi, How did you do on Tymlos? I am concerned to start it because I already have fatigue from low thyroid. Thanks!
Mary

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