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Have you used alternative dosages for Tymlos or Forteo?
Hi everyone: I’m in my fourth month of Tymlos injections. I’ve noticed from time to time that people mentioned using a variation of the usual dosage of Tymlos or Forteo. For example, instead of one full injection every night, they were injecting every other night, or they were using a reduced amount of the medication in each injection. If you have used an alternative dosage, 1) what was it, 2) why did your doctor suggest it, and 3) how has it worked for you? Thanks!
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Hi Chris - I am starting Tymlos in a few months. I was on Prolia for 4 years and then last March I fractured my femur. Which can be a side effect of Prolia. Then went on Forteo (terepartide) for 6 months but unfortunately had to stop as my calcium and phosphorus went up drastically. Now onto Tymlos. I am confused as to everyone on these posts are talking about increasing the dose gradually but when I spoke to the pharmacist at specialty cvs pharmacy, was told they have no idea what I was talking about. There is only one dose. Can you please explain how the pen works. Thxs
The pen has 8 "clicks." You can do any number of clicks up to 8. If you can tolerate a full dose, by all means do it. My doc was very happy that I started low and got up to 7 clicks out of 8. Tymlos has hormonal action and our bodies adjust to it. But some people can start at a full dose from the start.
Remember that doctors and pharmacists rely on what was done in studies. My doc is a top doc at a major hospital and would have been happy even with a half dose of 4 clicks versus not doing it at all.
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1 ReactionThank you @windyshores. Awaiting insurance approval on Tymlos.
Hi there @dee5. I see you joined Connect on Valentine's Day......a lucky day for both of us. I would like to introduce you to @windyshores, a current Tymlos user and a quite knowledgeable person who understands how the Tymlos pen "clicks" work. I completed my two years on Tymlos before that was an
option. Good luck to you and thank you @windyshores.
Thank You @artscaping. What are you going to take now? All the best.
I have written a lot of posts about my experience with dosing for Tymlos. My first attempt with a full, or even half, dose caused a lot of side effects for me: headache, dizziness, chest pressure, heart palpitations (I landed in the ER with an afib episode which may or may not have been related, since I have had episodes before).
I called Tymlos and their pharmacy NuFactor, and threw out my pens. Then I talked with cardiologists and endocrinologists- two each. I was deciding between Evenity and restarting Tymlos at a lower dose. Since we can take Evenity after Tymlos but not the other way around (to my knowledge and according to my doc, but check this), I chose to try Tymlos again.
The Tymlos pen has 8 clicks. I started at two clicks. I moved up slowly over 2 months, ending with 6 clicks (doc was happy) and after another month or so, to 7 clicks. I have been on 7 clicks for at least 10 months now. For the last few months I have had no side effects- zero. Maybe a little fatigue but hard to tell (taking care of an elderly mother is tiring in and of itself!)
This morning, after all this time, I again tried 8 clicks. Full side effects, chest pressure, heart palpitations, headache, woozy.
I am just hoping that this info that ONE click makes that much difference, might encourage others to play around with dosing.
We can benefit from dosing of 6 or 7 clicks, which according to my doc is a lot better than giving up altogether after sticking with 8.
And if you have side effects at a low dose, wait a week or two and your body will adjust, then go up a click. You will know when you have reached your tolerable effective dose. For me it is still not 8 clicks!
I am very motivated because I fractured. The problem with motivation with osteoporosis is that we don't feel it until we fracture. I wish I could go back and do Tymlos before fracturing, but I did not know the dose was adjustable and Forteo was not tolerable for me (no clicks on that pen). Good luck everyone!
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2 ReactionsFelt sick almost all day from 8 clicks, but feel fine with 7. So strange.
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1 ReactionI started on 2 clicks, then 4 clicks a week later. My endo (and reading from different groups) said that since I was 87 pounds and 4'8", that 4 clicks would be effective. I did try 6 clicks, but went into tachycardia for 24 hours, so I am now backed down and instructed only to use 40mcg and we will see in a few weeks how I am doing. I do want to get the full effect, but maybe I am since I am half the size of some of the people using the full dose.
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2 Reactions@lazuleo I went into afib after 8 clicks (not certain Tymlos caused it but...). I am fine now at 7 but it took quite a long time.
If you can tolerate 4 clicks why go up to 6? There is no hurry. Try 5 clicks for a month. Then try 6. IF side effects are bad at 6, back down again. The body does tend to adjust but apparently we ultimately have a limit. I am small too and cannot do 8, as I wrote before.
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2 ReactionsThis is very interesting to me, and makes me think I need a new doctor. I am only 5' tall, and weigh about 89 pounds, and neither of my physicians have suggested that the full Tymlos dose might be too much for me. But after months of making myself sick -- nausea, headache, palpitations -- on this drug, I am definitely going to go to a reduced dose. BTW, rheumatologists have been directing my care. Would an endocrinologist be more knowledgeable?
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