Taking Tymlos but Forteo recommended

Posted by drsuefowler @drsuefowler, Sep 24 12:32pm

Has anyone switched from Tymlos to Forteo and had fewer side effects? I went to a new endocrinologist today. She said that in her experience, people on Tymlos have more side effects than those on Forteo. She said that there is more problem with vasodilation on Tymlos.

I have been on 40 mcg of Tymlos for 7 months. I am not able to tolerate a full dose. I have low blood pressure, am a fall risk, have fatigue and have swollen, painful veins in my legs. The original trial reported that there is spine improvement on a half dose after 6 months, but no improvement in hip. They decided to then try 80 mcg which is what they ended up with. The doctor said that the bones I have broken are cortical and it would be a shame not to improve those bones in addition to the spine. When I asked about Evenity, she wanted me to finish a course of parathyroid medicine first. She put in an order for Forteo and we'll see if insurance will cover it. I asked her if I could go back to Tymlos if Forteo didn't work and she said I could. I am scared to try a full dose of Forteo.

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@windyshores

@susyt I hope you can get your Vitamin D3 up quickly. That is important with Tymlos. I once read that Tymlos "eats D3" so I upped mine to 3,000 units per day and my level stayed stable at 52. Once I finished with Tymlos it started to rise too fast so I went back down to 1,000-2,000 a day.

If full dose is problematic it might be better to lower the dose than stop. My doctor agrees with this and is suggesting this to his patients. For me there was a huge difference between 70mcg and 80mcg, I never tolerated 80 but did okay with 70mcg- but only after backing down to a lower dose and moving up. If you have been on full dose for awhile you might not need to titrate but could just do to 60mcg for awhile.

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That's really helpful, thanks. I think I will try cutting back 10mcg at a time, stopping at each level for a couple days or so.
My Vit D is at 29, so I am increasing the supplements!
Thanks!

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@mayblin

@drsuefowler it's interesting that your endo has a clinical observation on the differences of side effects for these two anabolics. I've read some publications on various dosing of Forteo. The 20mcg and 40mcg of Forteo were compared in a randomized clinical study. The 40mcg Forteo increased bmd more than 20mcg, however, the 2 doses had similar effects on the risk reduction of fracture. 40mcg seemed more likely to cause side effects. These might be the reasons that 20mcg was marketed. A dose of 56.5mcg once weekly is used in Japan. In their clinical study, the dropout rate for this dose, even once weekly, is high compared to placebo group due to side effects.

Although we can't compare side effects directly between Tymlos vs Forteo, a dose-dependent relationship for side effects may exist. If you are stabalized with 40mcg Tymlos, you might want to titrate upwards like @windyshores suggested to see if tolerable. Thank goodness the pen is adjustable. Otherwise, your endo may have a point.

I took Forteo also with minimum side effect - only fatigue due to low blood pressure for first one and a half months, nothing else. Increased hydration and salty food/liquid helped a lot. Sometime I wonder if the side effects of these two meds are more noticable to those of us who have low blood pressure to start with.

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I tried one dose of tymlos at full dose and had the worst migraine in my entire life. I'm very small, history of migraine, and have lower blood pressure to begin with also. I am not sure which of these drugs would be safe for me to try again as it seems I'm very sensitive to changes in factors that influence blood vessel dilation. So is the dose of Forteo equivalent to Tymlos? Dose of what? Is it basically the same drug? Or different enough the doses don't match? I get confused about what to ask for. Evenity was a failure too...I had such bad insomnia i was in tears for weeks.

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@tkdesign

I tried one dose of tymlos at full dose and had the worst migraine in my entire life. I'm very small, history of migraine, and have lower blood pressure to begin with also. I am not sure which of these drugs would be safe for me to try again as it seems I'm very sensitive to changes in factors that influence blood vessel dilation. So is the dose of Forteo equivalent to Tymlos? Dose of what? Is it basically the same drug? Or different enough the doses don't match? I get confused about what to ask for. Evenity was a failure too...I had such bad insomnia i was in tears for weeks.

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There was a discussion a few months ago on this forum regarding the comparison in dosing between Tymlos and Forteo. Since these two drugs are similar in molecular weight (thanks to @normahorn ), an equivalent of 4x in weight of teriparatide (Forteo 20mcg) is needed for abaloparatide (Tymlos 80mcg) to achieve similar efficacy. Of course these two drugs are not exactly the same although they are closely related chemically and mechanism wise. Abaloparatide/Tymlos binds to PTH receptor differently than teriparatide/Forteo does, this may result in its slightly better clinical outcome - fracture risk reduction as well as bmd increase.

In ACTIVE (a phase III study) trial, a head to head comparisons between abaloparatide/Tymlos 80mcg vs teriparatide/Forteo 20mcg were studied. 80mcg abaloparatide/Tymlos were slightly better in fracture reduction as well as bmd increase when compared to 20mcg teriparatide/Forteo. The dropout rate due to adverse event though, is higher among abaloparatide/tymlos group (9.9%) vs teriparatide/forteo group (6.8%).

It's an advantage that Tymlos pen is adjustable. You could try @windyshores "ramping up" method -start with a low dose, ramp up once stabalized until you get to maximum (tolerable) dose. Hope your body could adapt to a full dose gradually with minimum migraine occurance. Best of luck in your journey!

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@tkdesign

I tried one dose of tymlos at full dose and had the worst migraine in my entire life. I'm very small, history of migraine, and have lower blood pressure to begin with also. I am not sure which of these drugs would be safe for me to try again as it seems I'm very sensitive to changes in factors that influence blood vessel dilation. So is the dose of Forteo equivalent to Tymlos? Dose of what? Is it basically the same drug? Or different enough the doses don't match? I get confused about what to ask for. Evenity was a failure too...I had such bad insomnia i was in tears for weeks.

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@tkdesign yes try 20mcg (two clicks of the pen). You can stay on that for a week or two and move up to 40, then keep going as tolerated. My doctor was okay with 60mcg, and very happy with 70. I never got to 80mcg (full dose) but had dramatic gains.

Oh- I did do full dose once, at the beginning and ended up in the ER. Yet I was able to do two years at an adequate dose (eventually 70mcg) with 20% gain in spine. Good luck!

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I have never had the new Tymlos because I took Forteo back in 2016-2018. What happened to me, (and everyone is different,) is that it wasn’t until after I stopped the drug that I realized how much vomiting it caused. (Forteo is taken daily for 2 years.) I was blinded so to say, because I had another condition at the same time that caused nausea and vomiting.
The nausea was bad enough to necessitate using Scopalamine patches. (Zofran helped but it wasn’t enough.) I had terrible skin breakdown from the Scopalamine no matter where I put it on my body - even my ankle. Towards the end of my treatment, I learned about using ginger chews. (Apparently it helps patients on chemotherapy.)
At my follow- up dexa scan I had 25% increase in BMD in hip, but 14% decrease in wrist. I called the manufacturer and asked how can this be? I was told that drugs can work differently in different body parts.

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@maryconnn

I have never had the new Tymlos because I took Forteo back in 2016-2018. What happened to me, (and everyone is different,) is that it wasn’t until after I stopped the drug that I realized how much vomiting it caused. (Forteo is taken daily for 2 years.) I was blinded so to say, because I had another condition at the same time that caused nausea and vomiting.
The nausea was bad enough to necessitate using Scopalamine patches. (Zofran helped but it wasn’t enough.) I had terrible skin breakdown from the Scopalamine no matter where I put it on my body - even my ankle. Towards the end of my treatment, I learned about using ginger chews. (Apparently it helps patients on chemotherapy.)
At my follow- up dexa scan I had 25% increase in BMD in hip, but 14% decrease in wrist. I called the manufacturer and asked how can this be? I was told that drugs can work differently in different body parts.

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@maryconn, did your nausea and vomiting stop when you were done with Forteo? Did you have good results on your spine as well as your hips? It is disturbing that your wrist was worse. Did you take a follow up medication to lock in gains?

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@windyshores

@genlty I cannot access that link. I thought cortical porosity was a key to flexibilty, but not strength. I have not seen any studies on this idea or the one you cite, and wish I could read it.

I have noticed that treatment, at least with Evenity and Reclast, has made me stiffer, less able to lift or reach w/out pain. I don't recall this effect with Tymlos. It does make me wonder about bone density vs flexibility.

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Right click, "Open link in new tab". It works best on the first link.

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