Struggling with Tymlos medicine

Posted by darla1 @darla1, Sep 1, 2023

Hello, I’m turning 55 this November , was diagnosed with late stage osteoporosis, started Tymlos 2 weeks ago, with immediate side effects from the very first dose. My dr has had me start with 80, 8 clicks. I’m 105 lb soak and wet. My bones hurt before I began Tymlos, now the pain has become excruciating in my bones, muscle weakness, heat palpitations after each dose, headaches that never go away, and change in my mental health.
I see my Dr for the first time since beginning Tymlos next week. Which I will discuss the issues I’m having.
Has anyone made it through the 2 years? Did the drug improve their bone density? I guess what I’m asking ,
Is this worth what I’m putting myself through mind, body, and soul?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Profile picture for njx58 @njx58

@lisaberkowitz I was nervous about self-injecting, too - and I'm a guy who tells the doctor "sure, do whatever test you want to do." Once I tried it, I saw that there was nothing to worry about. First, the needle is really, really short and very thin. It's nothing like the ones they use to draw blood or to give you a shot. Second, because it's so small, it doesn't hurt. I know, you think that as soon as the needle touches you, it's going to hurt, but that's not the case. It goes into the fatty tissue right under your skin. It doesn't hit muscle.

Occasionally it might pinch a little, but then you just pick a different spot. A pinch is the worst thing you will feel, and that usually won't happen.

Dosage: many people find that the full dose of 80 is too much. They compensate by not clicking the pen all the way to 80. Each click equals ten, so, for example, four clicks is a half-dose. Maybe they start with three or four, and if that works well, they move up one click next time. Some people manage to work their way up to 80, but others find that five or six clicks is all they can tolerate. You can certainly start low, with three clicks, and see how it goes.

Trust me, after a few times, it will be like brushing your teeth. You can do it, I promise.

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@njx58 Thanks so much for the reassurance. I think I'll follow your advice & start on 2-3 clicks until my body adjusts & work my way up gradually. I'm watching videos & have a demo scheduled with Tymlos nurse next week. Fingers crossed 🤞

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Profile picture for gently @gently

@lisaberkowitz
Sadly, windyshores has retired, but has left us with the wealth of her experience.
Start as low as you want 1 or 2 clicks and wait a day or so to see if there is negative effect, then move up a click or two and wait again. This gives your body a chance to adjust.
Some are dizzy after the injection as calcium is released into the bloodstream. It expands the blood vessels making your heart beat faster.
You can mitigate the effect by starting out hydrated, giving more volume to the blood to help fill the dilated vessels. Caffeine and salt constrict the blood vessels. Tea and an olive maybe.
As the vessels expand your blood pressure will drop, which you may not notice.
Some take the full 8mcgs and never notice anything. Some few are allergic to phenol the preservative in Tymlos.
The needle is so, so tiny. You can't injure yourself with it and you might not even feel it.
Some people pinch their skin first. If you pinch and let go before injection you are less likely to have a tiny bruise. You can inject in your stomach or your thigh with the same absorption rate. I like the thigh though I'm on the other pth drug, Forteo.
Nice sequence Evenity to Tymlos.

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@gently Thank you so much for the info & advice. This forum for discussion is a life saver, since endocrinologist don't tell you the option of starting Tymlos gradually. Appreciate your knowledge & support. 🙏Lisa

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Profile picture for njx58 @njx58

@margaretk You HAVE to follow up with a biphosphonate, and you need to do so quickly (i.e. you can't wait months.) There is no alternative. If you don't, you will lose the gains you made.

That is the nature of these anabolic medications. They artificially change the bone remodeling process to be in your favor, but if you don't follow up to lock in the gains, the process reverses itself and you will lose bone.

Please don't make this critical mistake.

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@njx58
I made it clear to the Bone Clinic Director that I did not want to ever take bisphosphonates. I went on Tymlos - she never mentioned that I would have to go on a bisphosphate after I finished the Tymlos. I guess I lost any gains that I made, but I got a kidney stone from the Tymlos as a consolation prize.

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Profile picture for lisaberkowitz @lisaberkowitz

@windyshores I'm starting Tymlos next week & would appreciate any tips on starting dosage recommendations as well as injection tips. I'm started watching videos & reading materials, which has made me more anxious not less. Just very overwhelmed. I was on Evenity for 11 months with no issues with side effects. Self injection scares me. Thanks, in advance.

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@lisaberkowitz I started Tylmos 2 weeks ago and began with 4 clicks for four days and increased the dosage by one click every four days. I will be on the full dosage, 80mcg tomorrow. So far I have not had any side effects-in fact feel great. I was very frighten for many years to go on medication and tried to manage it naturally( without success) so for now, am happy and relived I am on the road to treating my severe osteoporosis. I am 63, highly active and on no other medication, and remain hopeful. Hope this helps you in taking this step!

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Profile picture for lylii @lylii

@njx58
I made it clear to the Bone Clinic Director that I did not want to ever take bisphosphonates. I went on Tymlos - she never mentioned that I would have to go on a bisphosphate after I finished the Tymlos. I guess I lost any gains that I made, but I got a kidney stone from the Tymlos as a consolation prize.

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@lylii I understand your position, but it's just a chemical fact: stopping drugs like Tymlos, Forteo, and Evenity without following up will cause you to lose the gains. So then what was the point of taking the med to begin with? Are you due for a DEXA soon to monitor your bone density?

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Profile picture for njx58 @njx58

@lylii I understand your position, but it's just a chemical fact: stopping drugs like Tymlos, Forteo, and Evenity without following up will cause you to lose the gains. So then what was the point of taking the med to begin with? Are you due for a DEXA soon to monitor your bone density?

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@njx58
well, one point is that then you are two years older and haven't lost the bone you would have during those years and haven't fractured. Almost all the density (actually mineral content) gained is lost within 1 to 2 years. No rebound with Tymlos, there is time to hesitate.
If the cause of osteoporosis has been resolved. The best example is low testosterone (acutally estrodiol) because of ADT, you might better let CTX and P1NP guide you.
It is usually good advice that njx offers to follow Tymlos with another osteoporosis medication.

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Profile picture for njx58 @njx58

@lylii I understand your position, but it's just a chemical fact: stopping drugs like Tymlos, Forteo, and Evenity without following up will cause you to lose the gains. So then what was the point of taking the med to begin with? Are you due for a DEXA soon to monitor your bone density?

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@njx58
Thanks for the replies - I understand what you are saying, it's just that the provider never told me about it, even after I had finished the Tymlos. I was never told that I would need to take another drug to keep the gains. The clinic just sent me on my way. My husband was on Forteo, and he was told he would need 4 Prolia doses when he completed the Forteo. He had one, then was told he wouldn't need anymore. Would this be correct, or should he have stayed on Prolia from that point forward? Anyway, my Tymlos treatment ended in 2022. I had a DEXA in 2024 - it put me in the osteopenia range (I don't know the exact numbers) so it must have improved some. I just had another scan a month or so ago, and it was stable from the last one (osteopenia). I'm fortunate that I haven't lost more bone.

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Profile picture for ldd13 @ldd13

@lisaberkowitz I started Tylmos 2 weeks ago and began with 4 clicks for four days and increased the dosage by one click every four days. I will be on the full dosage, 80mcg tomorrow. So far I have not had any side effects-in fact feel great. I was very frighten for many years to go on medication and tried to manage it naturally( without success) so for now, am happy and relived I am on the road to treating my severe osteoporosis. I am 63, highly active and on no other medication, and remain hopeful. Hope this helps you in taking this step!

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@ldd13 Thanks so much for sharing your experience. Very helpful & reassuring. Here's to a good Dexa!

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@lisaberkowitz coming to terms with the diagnosis of severe osteoporosis has not been an easy process for me but as I have begun to accept the seriousness for what it is, so far, I am grateful that I am able to give Tylmos a try and hopeful of a good outcome. It is of course helpful to hear about others experiences, the trials, but really helpful to us newcomers to hear the tribulations!

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Profile picture for gently @gently

@njx58
well, one point is that then you are two years older and haven't lost the bone you would have during those years and haven't fractured. Almost all the density (actually mineral content) gained is lost within 1 to 2 years. No rebound with Tymlos, there is time to hesitate.
If the cause of osteoporosis has been resolved. The best example is low testosterone (acutally estrodiol) because of ADT, you might better let CTX and P1NP guide you.
It is usually good advice that njx offers to follow Tymlos with another osteoporosis medication.

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@gently I have indeed wondered about what you said about the causes being resolved. In my case, I was never given a cause, so I really have no idea if three years of nutrition and exercise have "fixed" something in addition to Tymlos.

This will come into play when I see the endo in January for my DEXA and one-year post-Tymlos follow-up. Is one year of Fosamax enough? Usually it isn't, but maybe? I'm going to be very interested to see what the DEXA says.

It is certainly frustrating flying blind, but we all know OP is an especially frustrating condition.

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