Treating Osteoporosis: What works for you?

Posted by heritage1955 @heritage1955, Apr 1, 2016

Hi. I'm new to the site and am interested in treating osteoperosis. I'm 39 yo and recently had a bone density that showed I'm at -2.4. So, going through the intial "I can't believe it" stuff. 🙂

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

@windyshores

There has not been a single case of bone cancer among people using Forteo (or Tymlos). The black box warning has been taken off Forteo and it can now be used for more than 2 years. This will most likely also happen for Tymlos but since it is new, it takes longer.

I have had breast cancer (2015) with risk of metastasis to bones but feel perfectly safe taking Tymlos.

These scare tactics are affecting people's health. There are certainly side effects and for some, possible health effects, but they need to be conveyed responsibly.

I would like to see the info on bone formation with Tymlos versus Forteo in the actual text on this, and any graphs.

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@windyshores - Again, it is good to hear that you find Tymlos of help. And thank you for the updated information about cancer risk.

I am a newbie to all this, gathering information here and from library books which is where I got the 2019 Calton book, probably written before the cancer risk was debunked as you mentioned. I lack the energy to retype more text - my primitive method.
Yes, being frightened affects our health. Not being attentive to risks and finding oneself regretting unwise decisions made in haste can also be bad for our health.
I think it best I simply read, rather than write posts.

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@notmoff

The Calton described horrors are mostly in the other drugs. Glad to hear you find Tymlos helpful.
But since you asked . . .
This excerpt (please excuse my typos) is from the Calton 2019 "Build Your Bones" book, page 34-5 that ..."Abaloparatide is a newcomer to the osteoporosis drug market, approved by the FDA in 2017. It's a small tweak on teriparatide that the pharmaceutical companies are hoping brings them a big monetary reward. Because of their chemical similarities, these two drugs have similar adverse effects. However, there are some pluses and minuses to choosing abaloparatide vs teriparatide. First, and this is a plus, our odds of getting hypercalcemia are less. On the mnus side, although the initial increases in the bone formation marker were similar for abaloparatide and teriparatide within the first month, by month three, bone formation began to decrease in the abaloparatide group compared with the teriparatide group. Basically, it's not as good at building bone. Both cause plausible increases in cortisol and calcium levels, as well as decreases in cognition and magnesium levels. Here again, the main issue is cancer. . .

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There has not been a single case of bone cancer among people using Forteo (or Tymlos). The black box warning has been taken off Forteo and it can now be used for more than 2 years. This will most likely also happen for Tymlos but since it is new, it takes longer.

I have had breast cancer (2015) with risk of metastasis to bones but feel perfectly safe taking Tymlos.

These scare tactics are affecting people's health. There are certainly side effects and for some, possible health effects, but they need to be conveyed responsibly.

I would like to see the info on bone formation with Tymlos versus Forteo in the actual text on this, and any graphs.

REPLY
@windyshores

What are the horrors of Tymlos, in the book? I am so grateful for this medication.

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The Calton described horrors are mostly in the other drugs. Glad to hear you find Tymlos helpful.
But since you asked . . .
This excerpt (please excuse my typos) is from the Calton 2019 "Build Your Bones" book, page 34-5 that ..."Abaloparatide is a newcomer to the osteoporosis drug market, approved by the FDA in 2017. It's a small tweak on teriparatide that the pharmaceutical companies are hoping brings them a big monetary reward. Because of their chemical similarities, these two drugs have similar adverse effects. However, there are some pluses and minuses to choosing abaloparatide vs teriparatide. First, and this is a plus, our odds of getting hypercalcemia are less. On the mnus side, although the initial increases in the bone formation marker were similar for abaloparatide and teriparatide within the first month, by month three, bone formation began to decrease in the abaloparatide group compared with the teriparatide group. Basically, it's not as good at building bone. Both cause plausible increases in cortisol and calcium levels, as well as decreases in cognition and magnesium levels. Here again, the main issue is cancer. . .

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@notmoff

I so appreciate all the detailed drug information shared here. When I asked my Kaiser spine doctor about oxylate-rich foods preventing my body form putting calcium into my bones, he referred me to an endocrinologist, but it appears most endocrinologists specialize in prescription drugs, not the effect of spinach on calcium absorption!
Now only 49 pages into the Mira and Jayson Calton book "Rebuild your Bones" that describes the horrors of Tymlos, Reclast, Forteo, Prolia, Eventity and the rest, I am so confused. Has anyone had experience trying the Calton micronutrient cure to osteoporosis? Did it help at all?

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What are the horrors of Tymlos, in the book? I am so grateful for this medication.

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I so appreciate all the detailed drug information shared here. When I asked my Kaiser spine doctor about oxylate-rich foods preventing my body form putting calcium into my bones, he referred me to an endocrinologist, but it appears most endocrinologists specialize in prescription drugs, not the effect of spinach on calcium absorption!
Now only 49 pages into the Mira and Jayson Calton book "Rebuild your Bones" that describes the horrors of Tymlos, Reclast, Forteo, Prolia, Eventity and the rest, I am so confused. Has anyone had experience trying the Calton micronutrient cure to osteoporosis? Did it help at all?

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@artscaping - huh, we’ll I don’t know. I’ll have to bring it up with my endocrinologist. She said I could be on Tymlos for 2 years, then be off of it for 2 years, then go back on it for 2 years, then go off again , etc.

Thanks for mentioning it.!

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I didn't know Tymlos had been approved for a second two years.

Patient assistance is only for 18 months, for the first round. I hope that changes!

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@ssapp1

I was on Tymlos for 2 years, did really well with it. When my endo told me I had to do the self injections, I said No Way. She assured me it was simple and it is. I HATE needles, but this I could do. Gained bone density, just got a little dizzy, so switched time of day. Went on prolia for a year, did not help. Then went on evenity. No side effects except for a very sore arm from the monthly shot.
I am going back to Tymlos soon. This has been the easiest and best treatment for me. We are all different and have to do what’s best for each one of us.
Good Luck

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Good evening @ssapp1, Thanks for explaining how you handled the needles. I also found it easy, breezy. I am glad your bone density improved. And now I have a question. If I understood your post correctly, you have done the following.
Tymlos 2yrs building bone
Prolia 1 yr protecting bone
Evenity 1 yr building and protecting bone
And now you plan to go back to Tymlos. Will that be for another two years? How do you plan to protect the bone you have created as Tymlos does not present that element? Has something been added to one of these medications?

Thanks for participating in the Osteoporosis group. It is very important to understand what members have chosen and what they have encountered.

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

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I was on Tymlos for 2 years, did really well with it. When my endo told me I had to do the self injections, I said No Way. She assured me it was simple and it is. I HATE needles, but this I could do. Gained bone density, just got a little dizzy, so switched time of day. Went on prolia for a year, did not help. Then went on evenity. No side effects except for a very sore arm from the monthly shot.
I am going back to Tymlos soon. This has been the easiest and best treatment for me. We are all different and have to do what’s best for each one of us.
Good Luck

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@windyshores

@mj20 like Chris I am sensitive to meds and I am small. My endocrinologist wants me in the hospital office if I ever do Reclast, and he wants to try 1/4 dose first. The thing is, Reclast hangs around in our bodies for a long time, so if there are side effects, you have them for awhile.

I tried Forteo and could not tolerate it. I saw an immunologist to try to get on it, years ago, before Tymlos was available.

I don't know why your doc suggested Forteo instead of Tymlos. They work in a similar, if slightly different, fashion through the parathyroid. Both build bone, and quality bone, because they don't affect resorption the way Reclast and Prolia do.

Tymlos comes in a pen with 8 clicks. As I have written before, I reacted to the full dose, regrouped, and started with only two clicks, then moved up to 7 for the past year. I feel a lot stronger.

Tymlos gives a strong foundation of quality bone, I have been told, before maintaining with Reclast, which stops resorption but does not have the same active bone-building ability.

I know it feels overwhelming. Maybe you could see a second doctor. To simplify, there are anti-resorptives (Reclast and other bisphosphonates, and Prolia), bone- builders (Tymlos and Forteo), and Evenity, which is both. I am saving Evenity for the future.

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Thank you so much. I wish all doctors were on the same page. I think I'll talk to my primary about this and maybe see an endocrinologist. You are so helpful. Thanks for your insights.

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