Has anyone been using Tymlos?

Posted by curlylocks @curlylocks, Aug 1, 2019

Has anyone been using Tymlos? I received devastating news that my bone density score is 4.6, much worse than my age of 72. Recommendation is Tymlos.

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@kathleenintexas I think we saw the same chiropractor! He also told me to go on Tymlos. I like him because he has been on meds but also has a lot of knowledge of "whole body" approaches.

I have fractures (7 in all) so I get it! Tymlos has made me so much stronger. My kids cannot get over it. I have my 18 month DEXA in March.

I could not handle a full dose (landed in ER) and so I restarted at 2 clicks of the pen: a full dose is 8. I ramped up and have been at 7 for more than a year. Side effects fade. I have had absolutely no side effects for months.

Hope it helps! My doc will put me on Reclast, possibly a partial dose at first, and if things stay stable after I "lock in" gains, I can take a break. I am also going to ask about Evenity if my DEXA hasn't improved enough. He leaves choices up to me which I appreciate.

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@marciagb

Has anyone had side effects that cleared up, and if so, about how long did it take for the side effects to subside? I have been on Tymlos for 3 weeks now and get headaches and a fast heart rate very shortly after each dose.

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Hi - I had all of the side effects, significantly, when I first started. I just hit my one month mark now with Tymlos. The game changer was thanks to a post by @ windy shores who indicated she did not use the full dose of 80 mcg. I no longer do the full dose and stop a click (sometimes 2) just shy of seeing the 80 in the pen window. I still have mild side effects like faster (but not rapid) heartrate and my worst side effect is that it makes me feel a bit woozy and tired. I'm going to stick with the lower dosage because it's better than nothing! I did tell my doctor what I was doing and she was fine with it. Give it a try and best of luck to you.

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@artscaping

Good evening @kathleenintexas. Welcome to Connect. Thank you for sharing so much of your bone health history in your first post. What a shame that you lost the positive bone-building from your experience with Forteo. I do note that you realize some of the test facilities use different scanning equipment. It might be wise to start a new scan series to make sure you have apples to apples.

Tymlos was my choice for two years and I had no side effects. The injections are simple and the refrigeration is not a problem. Unfortunately, I was placed on Tymlos while my scan scores indicated only osteopenia, not osteoporosis. Evidently, the endocrinologist was anxious to "sign me up". So there was no significant change in two years.

The problem for me came after Tymlos and I am happy to share that disaster with you as a warning when you are ready. I am good to go now at the "young" age of 80 and "hope" is alive again.

What are you most concerned about as you begin Tymlos?

May you be safe, protected, and free of inner and outer harm.
Chris

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Yes, please tell me about what happened to you after Tymlos. I want to learn all I can.
Thanks, Kathleen

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@kathleenintexas

Yes, please tell me about what happened to you after Tymlos. I want to learn all I can.
Thanks, Kathleen

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Good evening. Did you think I was never coming back? Nope...a little more snow than anticipated and an 81st birthday. How are you doing? I couldn't find a response about your concerns as you begin Tymlos. From my standpoint, there really was nothing to wonder about.
However, I was given only one choice after completing two years of Tymlos and that was Prolia. It did not work well and led to some pain and discomfort. I also did not feel comfortable taking something for virtually the rest of my life.

It turned out well when I requested a consult at Mayo with an endocrinologist and received a prescription for a medication that would not be a twice-a-year injection. That was just too much medication for my body to handle. The half-life was way too long. The substitute is a weekly pill that I take every Monday before getting started in my week.

Keep learning Kathleen. Knowledge is power.
May you be content and have peace.
Chris

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@windyshores

@kathleenintexas I think we saw the same chiropractor! He also told me to go on Tymlos. I like him because he has been on meds but also has a lot of knowledge of "whole body" approaches.

I have fractures (7 in all) so I get it! Tymlos has made me so much stronger. My kids cannot get over it. I have my 18 month DEXA in March.

I could not handle a full dose (landed in ER) and so I restarted at 2 clicks of the pen: a full dose is 8. I ramped up and have been at 7 for more than a year. Side effects fade. I have had absolutely no side effects for months.

Hope it helps! My doc will put me on Reclast, possibly a partial dose at first, and if things stay stable after I "lock in" gains, I can take a break. I am also going to ask about Evenity if my DEXA hasn't improved enough. He leaves choices up to me which I appreciate.

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Hi Windyshores,

Have you had your 18 month dexa? Hope you are doing well. Looks like I will be starting tymlos. Nervous about side effects and injections in my stomach. I have pretty bad gut issues.
Would love an update on your progress.
Candy

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@cireland

Hi,
I started taking Tymlos in January. It really affected my appetite for awhile, but my body seems to have adjusted and I am now taking it every night without any problem. I give myself the shot (really easy) just before going to bed -- so some of the side effects like nausea (very slight) aren't a problem. I will have another bone density in January, so am hoping to see improvement. I am 79
Hope this helps.and good luck.

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Thankyou for your impute I just started mine about an hour ago! Injection was easy,but it immediately gave me a headache and intense lower back pain! And my face felt very warm and flushed.Those symptoms are lightening up as I write also made me tired I don't like trying new meds at night ,but I do think I will take this one in the evening so as just to lay down and be done for the day .

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@artscaping

@curlylocks and @cireland Good afternoon, wow, I haven’t found anyone on Tymlos. Even my pharmacist said I was the first in this area. Would you be comfortable sharing the reason for choosing this osteoporosis medication. Mine reason is. that I had a severe reaction to boniva and could not use anything with similar ingredients. I am finishing week four and still have just a teeny weeny bit of nausea. I take mine in the a.m. because I am worried that I will fall asleep and not remember. I have been known to do that. And another question....did you get this through your regular RX insurance? Did you explore Canada? Hope you both are having a lovely day.

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Hi I didn't choose it my Dr did and my insurance pays for it as well ,my copay is $ 4 30 I have medicare and Medicaid,stomach starting to feel a little woozy but manageable at this moment! Won't know if this is for me for a couple more days of using it ,praying it works and prayed for our Lord to take away the side effects too! But I too have to take something to rebuild these very thin fragile bones I have had several fractures since last August and the worst when I fell in December 2022 I forgot to ask Dr what my bone density score is all ge said was they are bad! Will ask him on next visit thanks for all the great feedback on Tymlos

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Hi, Today is day 3 of my therapy with Tymlos. So far no side effects and I want stronger bones as a side effect. This is a very expensive treatment for me as I didn't discover until the last moment that my husband never signed up for drug/medicine treatment to supplement Medicare. My sister spent 30 years as a Clinical Dietician and she said under no condition take drugs which are not food. My story is just beginning.

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@candy209

Hi Windyshores,

Have you had your 18 month dexa? Hope you are doing well. Looks like I will be starting tymlos. Nervous about side effects and injections in my stomach. I have pretty bad gut issues.
Would love an update on your progress.
Candy

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You have every right to be nervous about injections. I'm old enough to remember when doctors used to sterilize and reuse needles. That being said, Tymlos needles are disposable and after two doses, I can not find the insertion point of either shot. Three cheers for having belly fat!!!

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Has anybody who is administering a daily Tymlos injection experienced calcium loss (measured as calcium in BMP blood test)?

Should those suffering from osteoporosis reduce daily protein intake? If so, how much protein ideal (recommended amount is 0.8 gm/body weight in kilograms)?

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