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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@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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@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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@mayblin, This is very interesting information. I appreciate that the manufacturer of Forteo was concerned about side effects and left the dosage at 20 mcg. Also, it is interesting about the weekly dose. It makes sense that there would be a dose-dependent relationship for side effects. Since it will take a long time for Forteo to be approved, I think I will try a little more Tymlos. The medications are so similar. I don't know why Tymlos wasn't tested at 60 mcg instead of jumping to 80 mcg. I wonder if we thin, small people with low blood pressure are the ones who get the side effects. Thanks

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@windyshores

@gently I should have used "density" not "strength." My personal feeling is that as my density increases, my flexibility is going down. Specifically reaching and lifting feel different. I am sure my fracture risk is better even if increased density means lower flexibility. I get the concept. I would be interested in studies and articles relating humans rather than buildings 🙂 (I did not have kyphoplasty for any of my fractures because the dense glass-like concrete might b liable to crack.)

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@windyshores ,
you may have been wise about kyphoplasty, but it is usually the vertebra above or below that crack--below because of the weight and above because of increased lack of flexibility. That painful instability is what drives the fractured to seek kyphoplasty.
When you first mentioned the density/flexibility pain issue, I thought it was, perhaps, in the joints. But, though not human (mostly rats), microscopy tests are telling the story about the difference between modeling and remodeling. In remodeling the osteocytes imbedded in the bone respond to our experience of the muscle pulling on the bone, as well as impact forces. This response realigns the spicules in an isoform most favorable to protection during activity. Protection, but also (I would suggest), comfort. Modeled bone provides fracture protection without the finess of remodeling.
Most of these "findings" are from pathologists in labs where no person would want to be the specimen.
"Finding," "suggestions," "possibilities," can only be cloying when we want, need answers.

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@gently, In what situation would modeling, rather than remodeling, occur? For growing children it would, but what about us older folks? Would it be when we break a bone?

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@drsuefowler, whenever you suppress the osteoclasts. When you break a bone both osteoclasts and osteoblasts increase.

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I started a TYMLOS in February. This summer I started getting progressively more tired, with stiff, achy knees, and my heart pls palpitations are through the roof. And muscle weakness. My doctor today said try a couple weeks without TYMLOS and see if that's the issue. He said if I feel better, maybe I would need to switch to Forteo instead. Anyone else totally exhausted and weak? Thanks.

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@susyt

I started a TYMLOS in February. This summer I started getting progressively more tired, with stiff, achy knees, and my heart pls palpitations are through the roof. And muscle weakness. My doctor today said try a couple weeks without TYMLOS and see if that's the issue. He said if I feel better, maybe I would need to switch to Forteo instead. Anyone else totally exhausted and weak? Thanks.

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@susyt, I am also very tired on half a dose of Tymlos. I also feel weak. I learned that most of the side effects I had were from too much calcium. I had to cut way back on my supplements. Please let us know if not taking Tymlos for a couple of weeks helps. I hope you feel better soon.

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I'll let you know. My calcium levels were just checked in my bloodwork. Completely normal. I was hoping it was something like that, so I could fix it with diet. My Vitamin D is below normal, but my doctor says that wouldn't cause these symptoms. Idk what to think. I've done the TYMLOS full dose (80) since I started in February.

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@susyt

I'll let you know. My calcium levels were just checked in my bloodwork. Completely normal. I was hoping it was something like that, so I could fix it with diet. My Vitamin D is below normal, but my doctor says that wouldn't cause these symptoms. Idk what to think. I've done the TYMLOS full dose (80) since I started in February.

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@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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