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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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I didn't have much for side effects the first day except a little fast heartbeat for a few minutes and a being tired. I am going to take it before bed time so I can sleep off the side effects. I have AFIB so not crazy about racing heart. But it didn't last long. God Bless your journey and mine too! Stay in touch!
@alicevondall
Thank you, blessings to you as well! Let me know how it goes!
@alicevondall I have afib too, usually once or twice a year, rather dramatically with heart rate close to 200. I went two whole years without any afib while on Tymlos. Go figure! My best afib years ever.
I do realize now that afib is another reason for some of us to take Tymlos in the morning. I only have afib in the evening,
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2 ReactionsWell that is good to know- My AFIB seems to happen when I am sleeping-gets up to 180. I took it last night but maybe I better go to mornings too
Have you looked in Osteo strong? I won’t take any drugs much to my doctor’s dismay. I saw an ad for Osteostrong and joined their program. The results have been very positive and I feel it’s the right program for me. My doctor agrees! Good luck to you!
Pat k
@patjack2 many of us didn't take drugs for awhile. I am hoping you are at the start of this journey and your DEXA scores aren't too bad. I also hope you efforts help you.
I come on this forum to tell folks that my fractures were and are painful and disabling, truly life-altering. Osteoporosis has no symptoms until we fracture, Fractures shorten the spine causing muscle spasms, as well as GI, lung and heart issues due to overcrowding in the inside. I feel that Tymlos literally saved my life.
I felt perfectly strong the day I fractured three lumbar vertebrae. We have to rely on factors other than how we feel, which is hard. Bone density, bone quality (TBS), Frax score including weight and height and CTX, P1NP blood tests as well as hormonal status.
I hope you will let us know how your program and you do.
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6 ReactionsEveryone is different of course, but I have zero side effects from
Tymlos.
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2 ReactionsI have been very lucky regarding osteoporosis drugs. I did five months of Forteo, five months of Tymlos, 12 months of Evenity, and now Reclast.
The first injections of Evenity I felt tired and achy the day after.
With the Reclast, I had little reaction. I did prep to the max for the Reclast infusion as recommended on here. Hydrated, Tylenol regimen, slow infusion.
I am in agreement with windyshores about fracturing.
I haven’t had an osteoporosis fracture, but my mother did. It ruined the last ten years of her life.
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3 Reactions@mkav2023,
your question was so good that it is still eliciting comment. What did you decide and what was your experience?
I am on month 5 . Honestly, my experience was HORRENDOUS. But I am an overachiever. They wanted to take me off because my side effects were so bad. I was angry my endocrinologist was so "absent" from my care. But when I heard the WORSE the side effects the BETTER is the positive effect, I refused to change to another medication. The nurse assistant, said: stick with it and the side effects magically disappear after a couple months. They did! I had them all (I am hypersensitive to medications!) nausea, fatigue, dizzy, pain in joints... I even stopped for a month to be sure I knew what was the side effects vs. regular arthritis I have. When I got back on that horse, I rode! Only then, did they tell me to start with 2, 4, 6, 8, clicks each week. I did but it didn't seem to matter. But when I got to 8 I stayed, and all the side effects completely disappeared about another month!
PLUS - at month THREE they did a P1NP and my number DOUBLED from the first month. My bone surgeon could also see my "bones are looking like they are a little denser in your spine!" You could see it in the xray!
I am still working as an artist at home so interfering with my work was a problem. Now, I am good. I suggest - if you are retired and can baby yourself for a few months then do so and see if you begin to get good test results.
I can get dental work on the Tymlos. (My wisdom took broke!) I was SO HAPPY I was on the Tymlos - because on the others you have to deal with possibly not having dental work done and healing issues.
If you are miserable - remember it means the medicine is working. I was on another medication 20 years ago where I wanted to die - because it ramped up my immune system to attack the virus hidden in my joints. When the medication killed all the virus I stopped experiencing violent pain. I am so glad I had that experience. This is much less, and not violent pain, so I am thankful. I can feel it working! good luck. try the other ones if you can't stick with it. Different strokes for different folks, you know?
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