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.

Evenity can be continued for two years and will continue to benefit bone density according to this report.
https://pubmed.ncbi.nlm.nih.gov/29694685/

The report is based on a study of patients who received Evenity for two years, followed by Prolia after completion of 2 years of Evenity. The report says that bone density continued to increase throughout the the 2 years of Evenity and continued to increase during the following year of treatment with Prolia.

I am posting this specific comment about Evenity because I have had a good experience with the medication. I have also noticed many other posts with positive comments about this medication in terms of low levels of side effects. The standard treatment with Evenity is one year but this offers the possibility of even further benefit.

I would be interested in thoughts of others in regard to this possible treatment.

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@windyshores

No we are discussing Tymlos, not Prolia. We give Tymlos injections to ourselves daily. The pens have 8 clicks for a full dose and some of us are starting with two and moving up.

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I am starting Tymlos injections in a few weeks. I discussed starting on a lower injection other than '8' clicks to lessen side effects, and to allow my body to slowly get used to the medication. But my Doctor was not familiar with the option of giving injections at a lower dose? I am wondering if anyone has found this 'lower click' injection information on a website, or url anywhere that I can share with my Doctor? Or was the this information something that your Doctor verbally provided as an alternate option to make ajustment to the medication easier for you? Thank you for sharing!

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@betterhealth

I am starting Tymlos injections in a few weeks. I discussed starting on a lower injection other than '8' clicks to lessen side effects, and to allow my body to slowly get used to the medication. But my Doctor was not familiar with the option of giving injections at a lower dose? I am wondering if anyone has found this 'lower click' injection information on a website, or url anywhere that I can share with my Doctor? Or was the this information something that your Doctor verbally provided as an alternate option to make ajustment to the medication easier for you? Thank you for sharing!

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My doctor is head of endocrinology at one of the top hospitals in the world.
He knows I am sensitive to meds and was totally on board with me starting low. But I suggested it after having a bad reaction to the full dose. I also called Tymlos and told them they are losing customers because many cannot tolerate full dose and give up. This is a hormone, so your body adjusts to it.

If you are not sensitive to meds go ahead and try the full dose or a half dose and maybe you do better than I did. If you do react, don't give up on the drug and start lower.

If your MD doesn't support this I would either get a new doctor or understand that you can do what you want. It won't take long to get to the dose prescribed.

Do you ever take half a pill that is prescribed? These decisions are ours to make. Docs have to follow protocols and Tymlos was studied at full dose. They need evidence, not anecdotes. But the point is to get to full dose, and avoid stopping altogether, for some of us.

Docs like mine are flexible, but not all are. I told my doc that I was doing this and he was delighted. Even more delighted with me at 7 clicks now.

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@windyshores

My doctor is head of endocrinology at one of the top hospitals in the world.
He knows I am sensitive to meds and was totally on board with me starting low. But I suggested it after having a bad reaction to the full dose. I also called Tymlos and told them they are losing customers because many cannot tolerate full dose and give up. This is a hormone, so your body adjusts to it.

If you are not sensitive to meds go ahead and try the full dose or a half dose and maybe you do better than I did. If you do react, don't give up on the drug and start lower.

If your MD doesn't support this I would either get a new doctor or understand that you can do what you want. It won't take long to get to the dose prescribed.

Do you ever take half a pill that is prescribed? These decisions are ours to make. Docs have to follow protocols and Tymlos was studied at full dose. They need evidence, not anecdotes. But the point is to get to full dose, and avoid stopping altogether, for some of us.

Docs like mine are flexible, but not all are. I told my doc that I was doing this and he was delighted. Even more delighted with me at 7 clicks now.

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Thank you for the information, it was very helpful! Take care!

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@betterhealth

I am starting Tymlos injections in a few weeks. I discussed starting on a lower injection other than '8' clicks to lessen side effects, and to allow my body to slowly get used to the medication. But my Doctor was not familiar with the option of giving injections at a lower dose? I am wondering if anyone has found this 'lower click' injection information on a website, or url anywhere that I can share with my Doctor? Or was the this information something that your Doctor verbally provided as an alternate option to make ajustment to the medication easier for you? Thank you for sharing!

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I looked up Tymlos and I found their patient information site. I just googled “Tymlos” and it popped up. It’s Tymlos.com. There is a lot of patient friendly information on their site and you can call their Clinical Educator at 1-855-730-8591 for information. Or if you have a question you can ask it on their online site. I admire your self advocacy. You know your body and your question can hopefully be answered with a phone call. Another source is your favorite pharmacist. Please post again and tell us what you learned, so we can learn from you.

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@windyshores

My doctor is head of endocrinology at one of the top hospitals in the world.
He knows I am sensitive to meds and was totally on board with me starting low. But I suggested it after having a bad reaction to the full dose. I also called Tymlos and told them they are losing customers because many cannot tolerate full dose and give up. This is a hormone, so your body adjusts to it.

If you are not sensitive to meds go ahead and try the full dose or a half dose and maybe you do better than I did. If you do react, don't give up on the drug and start lower.

If your MD doesn't support this I would either get a new doctor or understand that you can do what you want. It won't take long to get to the dose prescribed.

Do you ever take half a pill that is prescribed? These decisions are ours to make. Docs have to follow protocols and Tymlos was studied at full dose. They need evidence, not anecdotes. But the point is to get to full dose, and avoid stopping altogether, for some of us.

Docs like mine are flexible, but not all are. I told my doc that I was doing this and he was delighted. Even more delighted with me at 7 clicks now.

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I don’t understand the ‘clicks’ My injection pen is just one button to push slowly. I push it and count to ten. My doctor did not understand the half dose request. She said before you count to 5 you probably have the full dose already. I think I will call Tymlos about this. I have only done two doses and have experienced about 30 min of heart palpitations.

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The pen has 8 clicks. Turn it slowly and you will hear/feel it.

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The pen has 8 clicks. Turn it slowly and you will hear/feel it. I started with two clicks.

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@csday

I don’t understand the ‘clicks’ My injection pen is just one button to push slowly. I push it and count to ten. My doctor did not understand the half dose request. She said before you count to 5 you probably have the full dose already. I think I will call Tymlos about this. I have only done two doses and have experienced about 30 min of heart palpitations.

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If you push the green button without turning through any clicks, you are not getting any medicine. Your doctor must not know how the pen works (usually nurses do but not docs). Once you push the green button the whole dose, determined by the clicks, is immediately given. Holding it for 10 just makes sure the liquid med doesn't come out of the injection site. Those 10 seconds don't release any more med, just keep the med already injected inside.

Also make sure you prime the pen by doing 8 clicks into the air! You tap the syringe (clear area) first to get air bubbles up near the needle so the bubbles will go out when you prime.

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@sewcouture

Hi,

I took 2 shots of prolia and had the same severe bone and muscle pain, especially in my legs and the pain was the worst when lying down. I also experienced hair loss due to prolia. I told my endocrinologist I was stopping it. (Many drs say you cannot stop it but that is not true). My doctor is chairman of endocrinology at a large hospital complex in the Washington, D.C. area. I asked him to calculate my risk of broken bones if I stopped. Given that I have severe osteoporosis, he calculated that I had a 10% chance of a broken hip and a 25% chance of any broken bone in the next 10 years. I will take that chance as I feel great without the prolia. (I had been on other osteoporosis drugs prior to prolia but they all made me sick.) He did describe ergocalciferol, Vitamin D and Vitamin B12 which I faithfully take and I also stay active. I walk about 7000 steps/ day (except in snow or rain) and am generally active and busy.

Remember this is your body and the medical profession is closely allied with drug companies. Do what makes you feel good and is best for you.

Kaye

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Hi Kaye, I also have severe osteoporosis - T score of =3.7 lumbar spine, -3.1 proximal femur. Prolia can have some nasty side effects and I would prefer not to take it. Thanks for those percentages of risk of fracture. I had not heard. It works, for those who tolerate it, but then when you stop bone fractures are even higher in the first few months. Such a conundrum.

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