Which one to choose: Evenity, Tymlos or Forteo?

Posted by ninglike @ninglike, Nov 3 7:36pm

I have serious osteoporosis for years and finally decide to start treatment after my L1 compression fracture.
My endocrinologist suggested:
1. Evenity
2. Tymlos or Forteo
I'm scared of their side effects and don't know which one to choose.
Appreciate your opinions as well as pros and cons

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@windyshores

The kind grocery stores like Whole Foods have. I was kind of making the point that it doesn't have to be fancy or expensive! But for TSA the special medicine coolers might be more appropriate.

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Dear windyshores,
Thanks for your explanation!
Best regards
Ning

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@ninglike

Dear mayblin,
Thank you so much for your detailed explanation!
The 2 medicine coolers you recommended are both TSA-approved cooler that can be as Carry on to the airplane, right?
Also do you need to bring Dr's note to pass the airport security check as Carry on?
Thanks a lot in advance for your advice.
Best regards
Ning

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I've used either cooler flying domestic or international without incidences. Only on one occasion a TSA agent asked me to open the cooler to see what's inside. I usually take the outerbox of forteo with the Rx label with me - the Rx label is considered a legal document, but no one had ever checked it. To avoid opening carryon, I usually carry the cooler in my backpack. BTW, forteo pen can be left in room temperature for a cummulative 30-32 hours without losing potency.

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Dear mayblin,
Thank you sincerely for your sharing, which is so helpful!
Best regards
Ning

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@njx58

You can't make a decision based on personal stories. Here you have one person saying Forteo, the other saying Tymlos. Everyone is different. The majority of people do just fine with either one. You won't know until you start.

I'm on Tymlos. One thing I like about it is that it doesn't have to be refrigerated, so it's a lot easier to travel with it as opposed to Forteo.

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The endocrinologist I see said none of his patients have had a negative side effect from Evinity. My sister did Evenity and had no problems. The endocrinologist said Evenity or Tymlos. Then he chose Evenity for me. I did n’t think to ask why that over the other one, but I like that Evenity is for a year.

The nurse at the infusion center where I get the Evenity injections said she has not injected anyone who had a side effect, and that every one who goes to get the injection has completed the year long injections. All of that took away a lot of the fear of side effects.

It could happen to me, but I’m ore confident that it will

My biggest concern is that someone said the Evenity works best on the spine. My spine T score is back to zero. It’s the hips that are at -2. Well, it’s what it is and we’ll see down the road how it ends up. 😊

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Ninglike,I can't speak for anyone else but I have 6 fx's due to trauma and undiagnosed osteoporosis. I am on Forteo x 6 was and have very few side effects. I can honestly tell you I feel stronger and I wear a back brace and take supplements. Ask your Dr
I had a T12 fx for 3 years and didn't know it in fact worked and it healed itself. Good luck

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@willow5

The endocrinologist I see said none of his patients have had a negative side effect from Evinity. My sister did Evenity and had no problems. The endocrinologist said Evenity or Tymlos. Then he chose Evenity for me. I did n’t think to ask why that over the other one, but I like that Evenity is for a year.

The nurse at the infusion center where I get the Evenity injections said she has not injected anyone who had a side effect, and that every one who goes to get the injection has completed the year long injections. All of that took away a lot of the fear of side effects.

It could happen to me, but I’m ore confident that it will

My biggest concern is that someone said the Evenity works best on the spine. My spine T score is back to zero. It’s the hips that are at -2. Well, it’s what it is and we’ll see down the road how it ends up. 😊

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@willow5 I don’t know where the person(s) here received that information on Evenity—that it works better on spine. My endocrinologist did not say that and I haven’t read that anywhere. In fact my endocrinologist’s concern was that I gain more bone density in my femur (hip). I had a bone density scan on November 19 and that’s exactly what happened. I made a significant gain in bone density in my hip (6% gain) and did make a gain in my spine (4% gain). I did the 12 months of Evenity with no side effects. I had my first Reclast infusion two days ago with no after-infusion side effects. If indeed this Reclast infusion locks in the gains as my endocrinologist predicted then I will be very satisfied.

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In reply to @willow5 "Thank you!!" + (show)
@willow5

Thank you!!

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@willow with spine at 0 and hip at -2.0 you do not have osteoporosis? Do you have a fracture? Curious why you are on Evenity and how you got insurance coverage.

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I’m on Medicare and UHC supplement.

I don’t know if mineral bone density being osteoporotic is the same as osteoporosis. I assume so.

Ortho won’t do fusion with these results. He wants my bones to be stronger.

I previously had shared that the zero lumbar spine T score has a lot to do with my weight lifting. That was so great to see such a result.

Endocrinologist said in the last six months, this is more common for ortho surgeons in my area, to want the patients to be on the bone builders before surgery. And the surgeon I saw looked at these results and said it is osteoporosis. So I’m doing Evenity based on all that. I’m just north of San Francisco.

The T-score of the lumbar spine is 0.0 .
The T-score of the right total hip is -1.5 .
The T-score of the right femoral neck is -2.6 .
The T-score of the left total hip is -1.5 .
The T-score of the left femoral neck is-2.7 .

IMPRESSION:
1. The bone mineral density is osteoporotic.

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@willow5

The endocrinologist I see said none of his patients have had a negative side effect from Evinity. My sister did Evenity and had no problems. The endocrinologist said Evenity or Tymlos. Then he chose Evenity for me. I did n’t think to ask why that over the other one, but I like that Evenity is for a year.

The nurse at the infusion center where I get the Evenity injections said she has not injected anyone who had a side effect, and that every one who goes to get the injection has completed the year long injections. All of that took away a lot of the fear of side effects.

It could happen to me, but I’m ore confident that it will

My biggest concern is that someone said the Evenity works best on the spine. My spine T score is back to zero. It’s the hips that are at -2. Well, it’s what it is and we’ll see down the road how it ends up. 😊

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If any provider should tell me that NONE of their patients have had a negative side effect, I would immediately lose any confidence in them that I might have had. I will accept that none have had a major side effect but not their denying any effect. I would also accept that very few had a negative effect. Being less that totally honest is not something I want in a provider. Why then should I trust them on anything!

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