What happens after Tymlos?

Posted by alknapp @alknapp, Feb 21 4:55pm

I’m going to be finishing the 18 month course of Tymlos in April/May of this year. Endo is saying that I should follow that with Prolia (within weeks) and then Reclast.

Has anyone else followed that treatment plan or have any comments about it?

Thank you.

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My docs don't use Prolia after Tymlos because stopping it, even with a transition to Reclast, is risky. They use Reclast after Tymlos. However I convinced my doc to let me do Evenity and then Reclast.

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Good evening @alknapp and welcome to Connect. You have started a new discussion about what might be the best follow-up to Tymlos. I am glad to see that @windyshores has jumped right in to help you. And now I will try to help you by relaying my positive post-Tymlos experience.

After two successful years with Tymlos, my endocrinologist told me that the only option for me upon completion of Tymlos was Prolia. I didn't know enough at the time to dig in and do my own research. So I had twoProlia injections in the first year. After the first injection, I began to struggle with jaw pain. I kept a calendar that tracked the pain level and the number of days it lasted. At the same time, I started doing some research right here on Connect. Fortunately, my PCP recognized my struggle with Prolia and helped me secure a consultation with Dr. Wermers, an Endocrinologist at the Mayo Clinic.

The solution was to begin a weekly tablet of Alendronate (Fosamax) on the day that I was scheduled for my next injection of Prolia. This decision reduced the half-life amount of medication that was in my body. Some of us just don't have the ability to handle injections that last 6 months.

Suffice it to say, I will have completed 2 years of Alendronate this summer without any side effects. Then it will be time for a Dexa scan and I will know how well this medication maintained the bone that Tymlos built for me as well as the rest of the bone in my body.

Good luck with your decision. Please know that I am here for you.

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

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@windyshores

My docs don't use Prolia after Tymlos because stopping it, even with a transition to Reclast, is risky. They use Reclast after Tymlos. However I convinced my doc to let me do Evenity and then Reclast.

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Hi Windy

My Endo and I are at odds over following evenity with reclast. He wants prolia. When I questioned him about this he said that because I had been on alendronate for 5 years he did not want me on another bisphosphonate. Hmmm!

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My rheumatologist who I see for autoimmune disease as well as osteoporosis has said Prolia is only option. However I recently consulted with an endocrinologist who said that her recommendation is Reclast. She also said that, if I desire, she would manage my OP. I have decided to change from rheumatologist to endocrinologist for management as I don’t want to be on Prolia the rest of my life. Also I had 2 unusual osteoporotic fractures while on Prolia.

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@gravity3

Hi Windy

My Endo and I are at odds over following evenity with reclast. He wants prolia. When I questioned him about this he said that because I had been on alendronate for 5 years he did not want me on another bisphosphonate. Hmmm!

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@gravity 3 but you will have to do Reclast after Prolia and at that point you will have been on two anti-resorptives for a really long time total. We can take med breaks with Reclast with monitoring. With Prolia we cannot take a break. Can you get a second opinion?

If you are in your 80's, Prolia is probably okay because you won't necessarily ever have to stop 🙂 But it is another anti-resorptive with similar effects long term to a bisphosphonate in terms of jaw and femur, I would think. Another doc sounds like it would be helpful!

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Just want to add that I am going to do a 20% dose of Reclast with IV hydration and slow infusion. Probably in May. I will report back on this. After a month I am told to let me doc know what dose I want at the 3 month mark. I read, and my doc agrees, that a half dose is as effective as the full 5mg so I am aiming for that as a total for the first year. I have GERD and cannot tolerate alendronate but if you can, then the advice of @artscaping is the best!

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I wonder why so many docs push prolia over everything else, given all the drawbacks I've heard here? I'm still on Tymlos but dreading the decision on what to do next. My doc mentioned prolia too, but I'm going to seek another opinion. No way, no how will I go on that drug as someone in their late '50s. I'd have to be on it for what...like 3 decades? Crazy.

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I am a petite woman in late 70s and had commented about a month ago and may be worth repeating. I will finish my 2-yr Tymlos injection regime in August 2024. My endo (a new doc as the one who prescribed Tymlos for me has retired) suggested Fosamax or Reclast. I am inclined to request Fosamax since I had taken Fosamax after menopause for 10+ years.

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Thank you all for the responses, they’re very helpful. A little more info. I’m 64 years old, have diabetes, and receive an immunosuppressant infusion for another condition. So I’m also concerned about suppressing my immune system too much by adding Prolia.

My endo has said that Tymlos is for 18 mos., but I see that a couple of you have done it for two years. Doc was almost adamant that I start on something right after Tymlos, and I get that. Eighteen months is almost up. Maybe I should ask about extending my treatment with it for a few more months and get a second opinion?

Thanks again.

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@rajmayo22

I am a petite woman in late 70s and had commented about a month ago and may be worth repeating. I will finish my 2-yr Tymlos injection regime in August 2024. My endo (a new doc as the one who prescribed Tymlos for me has retired) suggested Fosamax or Reclast. I am inclined to request Fosamax since I had taken Fosamax after menopause for 10+ years.

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Hi @rajmayo22 could you keep us updated when you get your dexa scan after 2 years of tymlos? I'm curious to see if your previous 10-year on fosamax had any effect on the subsequent tymlos therapy. Thanks a lot!

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