Forteo vs. Tymlos

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!

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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@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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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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@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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@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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No, the pain has not receded totally. The pain pills really work well. I did have to get up at 3am and take a pain pill. Mornings are the worse when I get up. I hurt till I get a pain pill in me and a cup of coffee. I see my surgeon next Tuesday. I hope everything will be ok. I have been doing some bending and my husband says I'm twisting too. He always seem to catch me and gets upset, afraid I'm hurting my healing process. He tells me I'm not doing the rules. I tried to walk without my walker yesterday and felt off with every step, so I will take it with me today. I forgot to do my Tymlos last night, I have to continue on it, probably for 2 years. I have an x-ray next Tuesday too. I don't know when I will have a dex again.

The surgeon said my bones were soft, but not as soft as he thought they would be.
I told my psyciatrist today that I'm doing well on my Lexapro and Lamictal. I think I get a little depressed at night.
I hope you are doing well, let me know if you are not and thank you for the message. Jeanie

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@salpert

Thank you for your reply. I am seeing a endocrinologist for severe osteoporosis especially in my spine. She is putting me on Tymlos next week. I know it is newer on the market so I was concerned but reports I have read seem very promising,
I know that I will be put on another bone density drug once I complete the Tymlos cycle.
I appreciate your response and having a format to discuss this issue.
Stay well…thanks a lot!

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Hello again @salpert, I hope this finds you well and having had enough time to evaluate your osteoporosis bone-building choice. In the hopes that you might have some experiences to share, I am going to assume you are still on Tymlos and repeat this message.

I may have some good news for those of you who are on Tymlos or possibly Forteo. I may be in something greater than the glory hole. Have any of you worked with or heard of Optum Specialty Pharmacy. This pharmacy only fills prescriptions for specialty medications like Tymlos because of the refrigeration requirements until opened, and the distribution system which is by subcutaneous self-injections. Please let me know if you want, need, or just would like to have contact information.

The reason that I am passing this along is that I am on my second refill and I place a 90-day order to avoid backorder problems with COVID-19. I have been treated like a valued customer and have had no problems with the shipment. j

And now….here is the other news. Last 90 days, my 30-day refills were $300. That is much better than the $1000 every 30-day refill last year with the local pharmacy. This week, each 30 day supply was about $35 with Optum. The order also includes the needles and touchpads at no additional charge.

Do you know what that might mean for Forteo and/or Tymlos patients? Please share your "secrets" with me or ask questions for me to hopefully answer.

May you all be free of suffering and the causes of

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I have on Tymlos shots for 13 months and do have minor side effects Body aches ate the worst but the injections are painless and sometimes I have bruising
I have to stay on it another year cuz shoed she progress in hip but not spine. I have a compression fracture in my spine but not pain so I will continue to do injections and have no idea what to do ate two years.

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