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Tymlos lower dosage - Did it improve your osteoporosis?
Hello! I started my Tymlos journey about a month and a half ago. I am 5'3" and weigh 96 pounds. As suggested by many users, I ramped up my usage slowly.
I have been stuck at 6 clicks (60 mg) for the past three weeks. I have some mild, but tolerable, symptoms at 60 mg. But when I have tried to move up to 7 clicks (70 mg), my symptoms become intolerable.
I am curious if anyone had success (i.e., bone density improvement) at reduced Tymlos dosages.
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There's some information in this thread. There are people who can't get to the max dose, but are still getting results.
https://connect.mayoclinic.org/discussion/alternative-dosages-for-tymlos-or-forteo/?pg=7
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2 Reactions@eightlb I had a 20% gain in spine and 9% gain in hip- pretty dramatic- and went from severe to borderline in spine. I did 6 clicks for quite awhile (doc said that was a therapeutic dose) then got to 7. I alternated so that if I had an easy day I did 7 and if I had an important thing to do, I might do 6.
I had the same threshold where going to 8 made a huge difference in side effects. What a mystery! Toward the end I did do 8 occasionally but just a few times.
My doc told me I would have gains at 60mcg. It took quite awhile for me to tolerate 70mcg. You are probably fine either way. Is your doctor on board? Glad you got on the 60mcg!!!!
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1 ReactionHi Windyshores,
Thank you for your comment! And, thank for the suggestion of alternating to a higher dose on calm days.
And, it was especially reassuring to hear that for you jumping from 7 to 8 clicks resulted in a huge difference in side effects. I was beginning to think that my body's poor reaction to 7 clicks (as opposed to 6 clicks being relatively bearable) was purely psychosomatic.
Thank you njx58!
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1 ReactionI have been doing four clicks on Tymlos for 2/months When I went to five clicks, I started having severe symptoms. Even though I went back again to four clicks, on the symptoms have not disappeared. I get severe pain in my hands and my feet. I think I might try Forteo… i’ll see what the rheumatologist says next on Friday. I don’t know if my half dose is working at all. The first 30 days I get tachycardia, and I can actually taste the medication after the injection. The next 30 days on the same pen, no tachycardia, but I can still taste it but my less
I have been taking 40 mcg of Tymlos for 7 months. I take it before bed, so if I fall asleep right away I don't notice the side effects. I do have to urinate right away within the first hour and then again in a couple hours. I do get a bad taste in my mouth, but that could be because I sleep with my mouth open. I usually feel normal all day, except I tire easily. My DEXA results after 3 months at 40 mcg and 3 months before that at 20 mcg showed spine improvement and hip stability from 2 1/2 before. Spine went from -2.9 to -2.2. However, a REMS test showed a t-score of -3.1.
I, too, can only tolerate 5 mcg or 5 clicks of the Tymlos. And I weigh 100 pounds at 5’4”. Anything more & I get profound tachycardia, nausea & dizziness. I very much do believe having some Tymlos is better than nothing & should still improve our bone densities.
@tchristina I am the same size and weight. After awhile I could do 6. I have never been able to do 8. Maybe your body will adjust over time and you can inch up. I get it! Forteo is impossible for me with tachycardia and dizziness but I did slowly get to 7 clicks with Tymlos. We are all different!