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Improvement on reduced dosage of Tymlos
The tl;dr: My dexa scan showed improvement despite the fact I was on a reduced Tymlos dosage.
I started Tymlos last September. After being unable to tolerate the prescribed dosage of 80 mg (the disruptive side effects included incapacitating nausea and distracting leg pain), I dialed back my injections to 40 mg (four clicks), where I remained for almost two months. I was on Tymlos for a total of three months before stopping.
After three months of taking no medications for my osteoporosis my doctor and I decided I should restart Tymlos and aim for whatever dosage allowed me to function. I restarted Tymlos two months ago. This time, I ramped up more slowly, starting at just one click. I am currently up to three clicks, with minimal side effects.
More importantly, a recent Dexa scan showed that despite being on a reduced dosage of Tymlos, I went from osteoporosis to osteopenia in my spine and hip. (There was no improvement in the femoral neck.) I wanted to share both of these facts--that least one person out there showed improvement on a reduced dose of Tymlos and that the second attempt with Tymlos might have fewer side effects--because these were questions that I had. I was wondering if trying a reduced dosage was worth the effort and money. And, in case you are wondering the same, yes, it can be.
(I did want to point out that I have made other lifestyle modifications. These included following the Onero osteoporosis-focused exercise program and eating so much plain yogurt that it is basically a food group now. How much these contributed to my improvement relative to Tymlos, it is impossible to say.)
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I had side effects even on one click - nausea, stomach upset...that is all i could tolerate. But developed neuropathies all over so have had to stop again. But, my calcium levels were rechecked and much lower than every other time I've had it checked over many years. I am guessing the drug was working somehow to pull calcium from my blood and hopefully put into bone...just guessing. I am wondering if the doses they prescribe is higher than it need be. I always wonder too if a much lower frame/body weight person should have a much lower dose.
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2 ReactionsI did forget to mention that I weight 96 pounds and am 5'3''. Perhaps my small frame also contributed to the response I had to such a low Tymlos dosage over 5 months. I also think it was not clear from my initial message that even 40 mg (4 clicks) were too much for me to tolerate.
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6 ReactionsI am so happy that your doctor agreed with you taking the smaller dose. My rheumatologist woulnd’t allow it. I believe I would have benefited at 5’2” and 103 pounds. Now I’m in medicine limbo while I try to figure something else out. Congratulations on your gains❣️
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3 ReactionsDosages based on body mass would make a huge difference one would think. We adjust medications for children, but not for adults. It just doesn’t make sense that a 100 pound person gets the same dose as a 200 pound person.
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6 Reactions@darce3 kudos to you on such an improvement. Lower dose, interrupted treatment, eating plain yogurt, and you improved despite what the experts might say was unlikely. The exercise probably helped, but keep doing what you're doing is what I'd say 🙌
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