Forteo vs. Tymlos: Which did you choose?

Posted by suze317 @suze317, Oct 17, 2018

I have to make a decision on Forteo vs. Tymlos and am not sure what to choose. Forteo has been around a lot longer, but has to be refrigerated. Tymlos only around 1 1/2 years but is shelf stable and seems to have less side effects and less issues with calcium. Can anyone offer their perspective? Thank you!

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@cabba

Hello.
I know this post is old, but can you please tell me where you found the information of a human getting osteosarcoma from Tymlos? I thought it was only found in rats. I am only doing my homework on this and your help would be greatly appreciated. Thank you!

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FYI … the Black Box Warning has been lifted from Forteo. I wonder if they will remove it from Tymlos as well?

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@windyshores

@cabba and @john bishop the two year time limit was lifted on Forteo because not a single person got osteosarcoma from it. The black box warning is gone.

Tymlos is newer but I have heard the same thing will happen with Tymlos.

I have had breast cancer so if that cancer spread to my bones, these meds could be a problem because they grow bone. But even with that history, I feel perfectly safe on Tymlos.

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Question to windyshores ... I've also had breast cancer and am considering taking Tymlos. Because you mentioned feeling "perfectly safe" taking Tymlos, I'm just wondering what side effects have you or are you experiencing taking this drug. Also how long have you been on it and what drug will you be taking after Tymlos?

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@toni7

Question to windyshores ... I've also had breast cancer and am considering taking Tymlos. Because you mentioned feeling "perfectly safe" taking Tymlos, I'm just wondering what side effects have you or are you experiencing taking this drug. Also how long have you been on it and what drug will you be taking after Tymlos?

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I have been on current dose for 10 months. I started at full dose and had problems. Restarted at two clicks of the pen out of 8 for full dose and moved up to 7 clicks slowly and have stayed there. My doc was happy with 6.

Side effects change over time and get better. I switched to morning which helped, but some prefer bedtime. I had headache, dizziness, heart palpitations all of which got better fairly quickly. I also had fatigue but I was in a cycle where I was less active which made the fatigue worse. Since I picked up my activity level, I am not having any side effects at all.

Depending on my DEXA, I will do either Evenity for further treatment, or a partial dose of Reclast with lots of hydration and tylenol and a slow infusion rate.

Years ago I tried Forteo and could not take it. I even saw an immunologist to try to get on it. I then mistakenly assumed Tymlos would not be possible. Net result was several spinal fractures.

Believe me you don't want those. I would endure significant side effects at this point but fortunately I have not had to. Starting with a low dose and moving up once my body adjusted to that dose really worked for me.

ps My doc has mentioned stopping at one year and "saving" a year for the future. He is great at discussing options with me and letting me choose. I have seen a chart that shows a fairly steep climb in bone density for the first 6 months on Tymlos, a less steep but still significant climb for the second 6 months, and then it starts leveling off a bit.

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@windyshores

@cabba and @john bishop the two year time limit was lifted on Forteo because not a single person got osteosarcoma from it. The black box warning is gone.

Tymlos is newer but I have heard the same thing will happen with Tymlos.

I have had breast cancer so if that cancer spread to my bones, these meds could be a problem because they grow bone. But even with that history, I feel perfectly safe on Tymlos.

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I have heard the same thing as you have. I have also had breast cancer 17 years ago. I don’t worry about cancer cells in my bones, but I had radiation to my chest wall.
I think of it as scarred or now abnormal bone caused from being radiated that could become osteosarcoma if encouraged to grow ?I never confirmed this thinking with my doctorand could hopefully be wrong, but I am sure it says in the warning “ if you’ve had radiation therapy involving your bones” along with “ if you have had cancer in your bones”. Nevertheless, my doctor brought up “radiation” as a concern, didn’t go into detail, but isn’t discounting Tymlos as a treatment. He actually thinks this will be the best one for me, but leaving the risk for me to decide. Glad to see you are doing well on Tymlos and appreciate your input immensely.

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That's a tough one without more information. I think even 6 months or a full year would probably be safe. The steepest climb in bone density is the first 6 months with good increase in second 6 months then it kind of levels off.

I don't see anything on the Evenity site about radiation as a concern. Evenity's black box warning is about cardiovascular concerns like heart attack or stroke.

Just fyi at this time you can take Evenity after Tymlos but not the other way around. Maybe you could do 6 months Tymlos (or a year?) and if needed, one year Evenity for maximum growth? Your doctor sounds like they will consider options and help you decide.

What kind of monitoring can be done?

Here is the text from the Tymlos site:
"Before you take TYMLOS, tell your healthcare provider about all of your medical conditions, including if you:
have Paget’s disease of the bone or other bone disease.
have or have had any of the following: cancer in your bones; radiation therapy involving your bones; too much calcium in your blood; too much of an enzyme called alkaline phosphatase in your blood; or an increase in your parathyroid hormone (hyperparathyroidism)."

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@windyshores

I have been on current dose for 10 months. I started at full dose and had problems. Restarted at two clicks of the pen out of 8 for full dose and moved up to 7 clicks slowly and have stayed there. My doc was happy with 6.

Side effects change over time and get better. I switched to morning which helped, but some prefer bedtime. I had headache, dizziness, heart palpitations all of which got better fairly quickly. I also had fatigue but I was in a cycle where I was less active which made the fatigue worse. Since I picked up my activity level, I am not having any side effects at all.

Depending on my DEXA, I will do either Evenity for further treatment, or a partial dose of Reclast with lots of hydration and tylenol and a slow infusion rate.

Years ago I tried Forteo and could not take it. I even saw an immunologist to try to get on it. I then mistakenly assumed Tymlos would not be possible. Net result was several spinal fractures.

Believe me you don't want those. I would endure significant side effects at this point but fortunately I have not had to. Starting with a low dose and moving up once my body adjusted to that dose really worked for me.

ps My doc has mentioned stopping at one year and "saving" a year for the future. He is great at discussing options with me and letting me choose. I have seen a chart that shows a fairly steep climb in bone density for the first 6 months on Tymlos, a less steep but still significant climb for the second 6 months, and then it starts leveling off a bit.

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(Thank you)
There are so many different calcium supplements out on the market: Citrate, Carbonate, Plant Based, Hydroxyapatite, Alga Seaweed ... Does anyone have an input on this subject? Also, along with drug treatments, does anyone take vitamins and supplements? If so, which ones are you taking, does it help or is it a waste of money?

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@toni7

(Thank you)
There are so many different calcium supplements out on the market: Citrate, Carbonate, Plant Based, Hydroxyapatite, Alga Seaweed ... Does anyone have an input on this subject? Also, along with drug treatments, does anyone take vitamins and supplements? If so, which ones are you taking, does it help or is it a waste of money?

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I have a dairy allergy. I take calcium citrate mostly but need Tums sometimes and that is carbonate. Not as well absorbed.

I also take Vitamin D 2-3,000 units in Gummie form, including one per day that is Vitamin D3 andK2. I also take magnesium (and potassium in the form of low sodium V-8) but for heart and muscle cramps. Finally, unrelated to bones I believe, I take B complex and extra folate.

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@toni7

(Thank you)
There are so many different calcium supplements out on the market: Citrate, Carbonate, Plant Based, Hydroxyapatite, Alga Seaweed ... Does anyone have an input on this subject? Also, along with drug treatments, does anyone take vitamins and supplements? If so, which ones are you taking, does it help or is it a waste of money?

Jump to this post

I take Calcium, Vitamin D, Magnesium, Vitamin K and Boron for bone development. I also monitor my diet so I know what I get from food. Then I add the amount of supplements that the food I eat does not supply. I have chosen to take the supplements individually instead of combined in one tablet. This is what works for me. We all have to make our own choices about medications and supplements that support bone health.

I started out by searching Amazon for ratings on bone supplements. However, that left me with too many questions. My comfort level lies in facts and I look for scientific research. One company I found I trust for research on supplements is called ConsumerLab.com. They primarily test for content, strength, purity and disintegration. In addition to their own testing they also summarize other research that has been done. Of the supplement brands they test they provide ratings of TOP PICKS, APPROVED and NOT APPROVED. Reasons are given for the different categories of ratings. I find them to be well researched and detailed in their recommendations. The only downside is that they do require a membership to access full reports. Currently their rates are: $3.96/ month for 2 years billed at $95 and $4.75/month for 1 year billed at $57.00. You can't buy just one month at a time.

They provide a significant amount of information. Should you decide to subscribe, I recommend reading through the extensive research they present in addition to their recommendations on individual products. The more facts I am given, the more comfortable I am with my decisions.

I wish you the best as you make choices for your optimal health.

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2 years of teriparatide restores bone quality to premenopausal levels

'Teriparatide restores bone mineral quality to premenopausal levels for women with postmenopausal osteoporosis if taken for 24 months, but not if taken at shorter intervals, according to study findings published in Bone."

"Raman microspectroscopic analysis was used to compare bone quality indices pertaining to mineral and organic matrix at actively forming trabecular bone surfaces in iliac crest bone biopsies at three distinct tissue ages. Mineral-to-matrix ratio, mineral maturity/crystallinity, tissue water, glycosaminoglycan and pyridinoline were compared between the groups."
https://www.healio.com/news/endocrinology/20220726/2-years-of-teriparatide-restores-bone-quality-to-premenopausal-levels?utm_source=selligent&utm_medium=email&utm_campaign=news&M_BT=8019573958709

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@callalloo the way I read that, there is benefit from even 6 months:

"Both teriparatide groups had increased mineral-to-matrix ratio compared with the postmenopausal group taking placebo. Mineral-to-matrix ratio was similar between the 6-month teriparatide group and the premenopausal group, whereas the 24-month teriparatide group had higher values compared with all other groups." (There were a few other factors were 24 months was better...)

The greatest gain in bone density is from the first 6 months, then it slopes to a year and then after the first year a gentler slope, from charts I have seen. When you add bone quality to bone quantity, so to speak, it would seem there is benefit to regimens shorter than 2 years.

They did not measure one year or 18 months, it seems. So I feel it may be misleading to conclude that bone quality only improves with 24 months.

Am I reading this correctly? Thoughts? Many docs do one year and save these drugs for later. With the time limit lifted with Forteo, not sure what is happening!

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