1. < Osteoporosis & Bone Health

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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ritafarmer | @ritafarmer | May 15, 2020
In reply to @contentandwell "@lioness I think @ritafarmer is saying that the drugs improved her bone density and put her..." + (show)
@contentandwell

@lioness I think @ritafarmer is saying that the drugs improved her bone density and put her back at the level of osteopenia rather than where she had been, with osteoporosis.
JK

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That's correct!

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lioness | @lioness | May 15, 2020
In reply to @ritafarmer "My first DEXA at the age of 41 showed severe osteoporosis. My doctor concluded that I..." + (show)
@ritafarmer

My first DEXA at the age of 41 showed severe osteoporosis. My doctor concluded that I was in a vulnerable group (white, petite, small-boned, Europesn ancestry).and that my steroid asthma inhaler and the occasion use of oral steroids caused the severe osteoporosis so early. When first introduced, the steroid asthma inhalers were believed to not have any "systemic" effects as was the case with oral steroids. However, when I read the full prescribing information for the inhaler, I saw that there was a statistically significant increase in fractures in the group of people who took the drug compared to those who not taking the drug. I guess that there ARE some systemic effects. But I have to breathe. I now also use a steroid nasal inhaler, and I use steroid eye drops to prevent rejection of my cornea transplants. So, "the deck is stacked against me."

After 20 years of treatment, my bone mass has increased enough that I am technically classified as osteopenia. I can still be treated because my original diagnosis was osteoporosis. Thank you for asking. I didn't realize that this would confuse anyone. I have been "anything but normal" for most of my life.

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@ritafarmer Thank you for your explanation I just never heard of this before . Im glad you where diagnosed now with osteopenia . Since I had osteopenia before now I want aware that you could be classified with it after the med you where on .

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arlene7 | @arlene7 | May 15, 2020
In reply to @lilypaws "@arlene7 I'm on Tymlos too. They told me for 2 years, but my endocrinologist whats me..." + (show)
@lilypaws

@arlene7 I'm on Tymlos too. They told me for 2 years, but my endocrinologist whats me to ask my surgeon if I can go off of it after I heal from my spine surgery and then they would start me on something else. It does make me fatigued, but I may be fatigued from the pain I have Tests done next Monday for surgeries on June 9th and 11th.

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I will hopefully start on Evenity soon. So sorry you're in pain...hoping your surgeries go well!

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1 reply
Kelly Hahn, Connect Moderator | @kellyhahn1 | Jun 9, 2020
In reply to @arlene7 "I will hopefully start on Evenity soon. So sorry you're in pain...hoping your surgeries go well!" + (show)
@arlene7

I will hopefully start on Evenity soon. So sorry you're in pain...hoping your surgeries go well!

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@arlene7 I was thinking about you and wondering if you were able to start on Evenity? How are you feeling?
@lilypaws I read that you are having surgery today and the 11th of June. I am sending you good thoughts- please let us know how you are when you are at a point that you can.

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1 reply
arlene7 | @arlene7 | Jun 9, 2020
In reply to @kellyhahn1 "@arlene7 I was thinking about you and wondering if you were able to start on Evenity?..." + (show)
@kellyhahn1

@arlene7 I was thinking about you and wondering if you were able to start on Evenity? How are you feeling?
@lilypaws I read that you are having surgery today and the 11th of June. I am sending you good thoughts- please let us know how you are when you are at a point that you can.

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thanks for asking....actually with all the insurance issues that I have had, I am hoping to hear soon for my first injection. Will definitely report back after first injection.

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dugs1948 | @dugs1948 | Jun 30, 2020

I have been taking Tymlos injections for one year and slight improvement in hip and a new compression fracture in my spine! left forearm not good from Dexa but i will continue on Tymlos for atlas six more months Need to find new osteoporosis doc in Colorado any suggestions?

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1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jun 30, 2020
In reply to @dugs1948 "I have been taking Tymlos injections for one year and slight improvement in hip and a..." + (show)
@dugs1948

I have been taking Tymlos injections for one year and slight improvement in hip and a new compression fracture in my spine! left forearm not good from Dexa but i will continue on Tymlos for atlas six more months Need to find new osteoporosis doc in Colorado any suggestions?

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Good afternoon @dugs1948. Welcome to Connect. We are very happy to have you join us. I am also on Tymlos and have five months to go before I have to transition over to a "preservative" now that the bone has been built up in the last 18 months.

I am concerned and a bit worried because the built-up bone will only last for two years. Then you have to protect it. Do you know what you are going to use? Are you working with an endocrinologist? Have you tried bisphosphonates like Boniva?

We are just hoping everyone pops in here to keep us all up to date and share their results.

May you be free of suffering and the causes of suffering.
Chris

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1 reply
jmanj | @jmanj | Jul 1, 2020

Hi All! I haven't posted for quite awhile, but have been keeping up with The Digest and following all the information exchanges. So, after being on Forteo for a year I went in for a Dexa scan to see what, if any, progress had been made. I'm happy to report my numbers had improved! There was a 12.8% improvement in Spine (L1-L4) from -3.0 to -2.1. And a 4.9% improvement in Femoral Neck from -2.8 to -2.6. My physician noted that my Vet D levels were still low, so I have to be more vigilant about taking my supplement regularly to help support the calcium production (I had slacked off ...). Then we had an interesting conversation about what to expect after completing the Forteo. His recommendation is to go to Reclast or Prolia (I'd update my research on both) for a period of time. But he also indicated that after taking a break from Forteo for "awhile" (whatever than means) it is allowable to do another round of Forteo. So since I have tolerated the Forteo with no side effects (that I can see) I will be looking at that as well. Of course, it is also vital to continue with healthy diet and exercise to augment and support whatever good stuff the Forteo is doing. But I am feeling optimistic.

So I hope that everyone is trying to remain positive during this Coronavirus period, and taking very good care of yourselves. It's a day by day experience to be sure, and a "new normal" that will result. Be well. Jill

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lilypaws | @lilypaws | Jul 1, 2020
In reply to @artscaping "Good afternoon @dugs1948. Welcome to Connect. We are very happy to have you join us. I..." + (show)
@artscaping

Good afternoon @dugs1948. Welcome to Connect. We are very happy to have you join us. I am also on Tymlos and have five months to go before I have to transition over to a "preservative" now that the bone has been built up in the last 18 months.

I am concerned and a bit worried because the built-up bone will only last for two years. Then you have to protect it. Do you know what you are going to use? Are you working with an endocrinologist? Have you tried bisphosphonates like Boniva?

We are just hoping everyone pops in here to keep us all up to date and share their results.

May you be free of suffering and the causes of suffering.
Chris

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@artscaping and @dugs1948 Yes, welcome dugs1948. I am also on Tymlos. I had to use it for 6 weeks before the big surgery I had and will have to continue for up to 2 years, unless they decide to change me. I had a fusion done on June 9th from T10 to my pelvis. It was a 9 hour surgery. I had it done at Mayo Clinic at Rochester, MN. The surgeon told my husband I must have been in a lot of pain, since I had nerves being pinched at L-4 & 5. They put rods in to help stop the degeneration. The degeneration had caused a scoliosis that they straightened out as much as they could. I saw an endocrinologist to get on my Tymlos.

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1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jul 1, 2020
In reply to @lilypaws "@artscaping and @dugs1948 Yes, welcome dugs1948. I am also on Tymlos. I had to use it..." + (show)
@lilypaws

@artscaping and @dugs1948 Yes, welcome dugs1948. I am also on Tymlos. I had to use it for 6 weeks before the big surgery I had and will have to continue for up to 2 years, unless they decide to change me. I had a fusion done on June 9th from T10 to my pelvis. It was a 9 hour surgery. I had it done at Mayo Clinic at Rochester, MN. The surgeon told my husband I must have been in a lot of pain, since I had nerves being pinched at L-4 & 5. They put rods in to help stop the degeneration. The degeneration had caused a scoliosis that they straightened out as much as they could. I saw an endocrinologist to get on my Tymlos.

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Hi there @lillypaws, you are certainly chipper these days. Has the pain receded totally? What is next on your rehab program? That is interesting what will happen about the Tymlos. Please let us know what you have decided and perhaps a why would be helpful.

May you have happiness and the causes of happiness.
Chirs

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