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.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@windyshores

I am hoping to do the same thing with Evenity: 3 or 4 sets of injections!

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Windy are you going to do 3 or 4 injections of Prolia after the Evenity and then reclast ?

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@kristie2

Windy are you going to do 3 or 4 injections of Prolia after the Evenity and then reclast ?

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No. I will do Reclast with a 20% test dose first. The idea of just a few Prolia's is something I will bring up with my doc in a couple of weeks but he has told me he avoids Prolia in his practice.

I've already done 2 years of Tymlos (after 5 years on a cancer med). I am about ready to be done at some point! But our estrogen levels will continue to be low . Hoping for a break in a year or two with monitoring.

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@katwhisperer

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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please whatever you do do not take prolia it is not a good drug and you will have a lifetime of compression fractures and nit of your doing

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@susyt

I just started Tymlos. My doctor, who specializes in osteoporosis, says we'll do a dexa at 18 months. Maximum 2 years on Tymlos. Then Prolia, but not more than 3 years because otherwise you have to stay on it forever if you go more than 3 years. I'm not sure what happens after the 3 years on Prolia.

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I need Tymlos but cannot afford it but don’t qualify for Radius’aid. May I ask if you found help through another source?

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@beckysews

I need Tymlos but cannot afford it but don’t qualify for Radius’aid. May I ask if you found help through another source?

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Nope, I didn’t.

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I know nothing about this but maybe someone needing financial help could check it out.
https://simplefill.com/osteoporosis-financial-assistance/

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@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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My doctor said 2 years on Tymlos was the limit so that's where I am right now. He wanted me to start on prolia but I am getting a tooth implant so I don't want to take a chance with that drug. I have a prescription for Evista and supposed to start this month. Hoping to find information on this site about Evista before I start.

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@jomck

My doctor said 2 years on Tymlos was the limit so that's where I am right now. He wanted me to start on prolia but I am getting a tooth implant so I don't want to take a chance with that drug. I have a prescription for Evista and supposed to start this month. Hoping to find information on this site about Evista before I start.

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What is his rational for wanting prolia? Is this an endocrinologist? If not, how about a second opinion?

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Has anyone considered bioidentical hormones to maintain their gains after Tymlos rather than Prolia or Reclast? I finish my 2-years on Tymlos this month and my rheumatologist wants me on Reclast. My cardiologist who monitors all my bloods is suggesting HRT because my counts are virtually nil. I’m 72 and had a complete hysterectomy when I was 38 with only a very limited time on hormones, therein my severe osteoporosis diagnosis 5 years ago. I’ve had improvement in my spine with Tymlos, with very minimal side effects. Now it’s time to begin another protocol and frankly I’m concerned about the next step. I am considering hormones as my cardiologist is well educated in their effectiveness for female health and feels confident they will help maintain my bones. I’ve never fractured, thank God, though my numbers were in the -4’s before Tymlos and I’m very active. I may consider a low dose Reclast infusion, like @windyshores as well and see how I do. I need to get busy as I only have another week before ending Tymlos. Lots of decisions that I don’t like having to make. But we have to be educated and advocates for our health regardless of what we read or are told. It’s quite a journey.

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@dooshie

Has anyone considered bioidentical hormones to maintain their gains after Tymlos rather than Prolia or Reclast? I finish my 2-years on Tymlos this month and my rheumatologist wants me on Reclast. My cardiologist who monitors all my bloods is suggesting HRT because my counts are virtually nil. I’m 72 and had a complete hysterectomy when I was 38 with only a very limited time on hormones, therein my severe osteoporosis diagnosis 5 years ago. I’ve had improvement in my spine with Tymlos, with very minimal side effects. Now it’s time to begin another protocol and frankly I’m concerned about the next step. I am considering hormones as my cardiologist is well educated in their effectiveness for female health and feels confident they will help maintain my bones. I’ve never fractured, thank God, though my numbers were in the -4’s before Tymlos and I’m very active. I may consider a low dose Reclast infusion, like @windyshores as well and see how I do. I need to get busy as I only have another week before ending Tymlos. Lots of decisions that I don’t like having to make. But we have to be educated and advocates for our health regardless of what we read or are told. It’s quite a journey.

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My situation is similar to yours. 76
Early menopause at 38. Spotty short duration hrt. I am having a functional medicine consult in August to see about testosterone and perhaps some form of estrogen. Would love to keep up with your discoveries. And kudos for having a doc who supports you.

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