1. < Osteoporosis & Bone Health

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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adrien5 | @adrien5 | Sep 18 11:32am
In reply to @artscaping "Good evening @alknapp and welcome to Connect. You have started a new discussion about what might..." + (show)
@artscaping

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

Jump to this post

Hi,
Thank you for sharing your experience with Tymlos.
I will be finishing two years on Tymlos this January. I’m in the process of doing some research. My doctor suggested Prolia or Evenity. I’m trying to find out if Medicare Part B will cover both or either of these meds.

Also, am I understanding correctly that you said you tried Prolia and after having jaw pain after two injections (one every six months) you changed to the Fosamax and you’ve been on that for two years. Is that a pill you take weekly in place of the Prolia injections every six months? Have you had any side effects with the Fosamax?

REPLY
njx58 | @njx58 | Sep 19 5:10am

Glad I found this thread. I'm still in the first year of Tymlos, but I'm starting to look ahead to the next phase. I do consult with Dr. McCormick. Everything I've read so far makes me nervous about using Prolia after Tymlos, even for a limited time. The unfortunate reality is that there is no one magic drug, and anything we take has pros and cons.

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1 reply
lhankins | @lhankins | Sep 20 9:30am

That is the same plan my rheumatologist has for me. I will be watching this thread closely. I am only into the second month of Tymlos, but the next step into Prolia makes me very nervous. I am hoping by the time I finish Tymplos there will be a better alternative than Prolia. Please keep us updated here on your path.

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gently | @gently | Sep 21 10:35am
In reply to @alknapp "Thank you all for the responses, they’re very helpful. A little more info. I’m 64 years..." + (show)
@alknapp

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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@alknapp, wondering what you decided and how you are doing.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Sep 21 11:23pm
In reply to @njx58 "Glad I found this thread. I'm still in the first year of Tymlos, but I'm starting..." + (show)
@njx58

Glad I found this thread. I'm still in the first year of Tymlos, but I'm starting to look ahead to the next phase. I do consult with Dr. McCormick. Everything I've read so far makes me nervous about using Prolia after Tymlos, even for a limited time. The unfortunate reality is that there is no one magic drug, and anything we take has pros and cons.

Jump to this post

Good evening @njx58. I think I read your comment correctly. And.....you are a lot like me.....wanting to do my research ahead of the actual decision time. I had a sad and somewhat painful experience with Prolia after a successful result from two years on Tymlos. I ended up with jaw pain and general discomfort from my first year on Prolia. Thank goodness, I found an endocrinologist, Dr. Wermers at the Mayo Clinic.

After his diagnosis and research, he recommended that I not start year two on Prolia but instead choose to migrate to Alendronate (Fosamax). The results have included successful dexa scores after two years and no side effects of any kind.

May you find a solution that can help you avoid nervousness.
Chris

REPLY
1 reply
njx58 | @njx58 | Sep 22 4:42pm
In reply to @artscaping "Good evening @njx58. I think I read your comment correctly. And.....you are a lot like me.....wanting..." + (show)
@artscaping

Good evening @njx58. I think I read your comment correctly. And.....you are a lot like me.....wanting to do my research ahead of the actual decision time. I had a sad and somewhat painful experience with Prolia after a successful result from two years on Tymlos. I ended up with jaw pain and general discomfort from my first year on Prolia. Thank goodness, I found an endocrinologist, Dr. Wermers at the Mayo Clinic.

After his diagnosis and research, he recommended that I not start year two on Prolia but instead choose to migrate to Alendronate (Fosamax). The results have included successful dexa scores after two years and no side effects of any kind.

May you find a solution that can help you avoid nervousness.
Chris

Jump to this post

I keep hearing about Dr. Wermers. I'm in the Northeast, unfortunately.

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