Drug holiday after Tymlos before Evenity

Posted by dooshie @dooshie, Sep 4 8:18pm

I just had my first visit with a new rheumatologist near my home. I finished my 2-year protocol with Tymlos in June and decided to take a couple of months to decide what drug would be next. I had a 10+% gain after 18 months and an additional 3+% after my Dexa in mid-July. Both my old rheumatologist and new one want me on Evenity. They both agree I need to begin the protocol right away but we are going on a vacation out of the country next week and I don’t want to begin a new med while we’re away. Has anyone gone off Tymlos for a couple of months before beginning another med? If so, did you lose any gains you had?

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My doctor wanted me to do Tymlos right up to the start of Evenity. He was not in such a rush after finishing Evenity and was okay with up to two months' break before Reclast after Evenity.

I saw somewhere (can try to find it) that Evenity lasts 85 days and that even one set of injections can grow bone. Perhaps you could have on set of injections before your trip. Then continue when you come back. Your doctor could discuss this with you. My doc said that Evenity takes time to mineralize so perhaps it could be working at some level while you are away.

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@windyshores Thank you for the info. I have to wait for insurance approval which could likely take a couple of weeks, so I will have to wait until we return at the beginning of October to start Evenity. I have been on bioidentical hormones for 2 months (Estradiol, Progesterone and testosterone) so I’m hoping that possibly, quite possibly that may slow down any bone loss until I begin Evenity. I could have started Evenity earlier but we were traveling and I couldn’t get in to take the 2nd injection.
I feel like I did when I first got diagnosed…a bit lost and concerned. It took me 2 years to agree to take Tymlos and now I have to begin another unknown drug again and only for a year, then another decision after that. If I could have stayed on Tymlos, I would be happy. Doc wanted me on Prolia until I could start Evenity but I passed because of the rebound effects.
How did you do on Reclast?

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Hi @dooshie congrats on your success with Tymlos! As I recall, you mentioned that you started HRT near or at the end of Tymlos treatment? If so, did you happen to get your bone markers checked before the start of HRT? You could check you bone markers before you leave for vacation to see where they are at. If estrogen suppressed CTX sufficiently, you might be able to get away with this short 'holiday', although generally docs follow Tymlos/Forteo with something. Might worth discussing with your doctor.

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@dooshie

@windyshores Thank you for the info. I have to wait for insurance approval which could likely take a couple of weeks, so I will have to wait until we return at the beginning of October to start Evenity. I have been on bioidentical hormones for 2 months (Estradiol, Progesterone and testosterone) so I’m hoping that possibly, quite possibly that may slow down any bone loss until I begin Evenity. I could have started Evenity earlier but we were traveling and I couldn’t get in to take the 2nd injection.
I feel like I did when I first got diagnosed…a bit lost and concerned. It took me 2 years to agree to take Tymlos and now I have to begin another unknown drug again and only for a year, then another decision after that. If I could have stayed on Tymlos, I would be happy. Doc wanted me on Prolia until I could start Evenity but I passed because of the rebound effects.
How did you do on Reclast?

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@dooshie due to kidney and afib issues my doctor is doing 20% test doses with IV hydration and slow infusion for my Reclast. I had a low grade fever and felt unwell for 5 days but otherwise it is going fine. My infusions are every 4 months until the dose goes up, so next week is my second.

Even if you were to lose a little bit (and I have no idea if that is likely) wouldn't Evenity restore it? I hope you can enjoy yourself!

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@windyshores

@dooshie due to kidney and afib issues my doctor is doing 20% test doses with IV hydration and slow infusion for my Reclast. I had a low grade fever and felt unwell for 5 days but otherwise it is going fine. My infusions are every 4 months until the dose goes up, so next week is my second.

Even if you were to lose a little bit (and I have no idea if that is likely) wouldn't Evenity restore it? I hope you can enjoy yourself!

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@windyshores at this point, I’m going to increase my bone loading and weight lifting exercises, continue with my bone supplements, my hormones and pray I don’t lose any of my gains. It won’t be until October that I’ll receive my first injection of Evenity. My new rheumatologist ordered blood work which included bone markers to see where I am. In the month between completing Tymlos and my Dexa scan, I still had a 3% gain in my spine and 2.4% gain in my hip, so I’m hoping, even if there’s a drop in gains, it won’t be significant.
Once I begin Evenity, I’m certain there will be gains again, as evidenced by the reports on this site of great responses from our osteo friends. 💕🌹 Rose

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@mayblin

Hi @dooshie congrats on your success with Tymlos! As I recall, you mentioned that you started HRT near or at the end of Tymlos treatment? If so, did you happen to get your bone markers checked before the start of HRT? You could check you bone markers before you leave for vacation to see where they are at. If estrogen suppressed CTX sufficiently, you might be able to get away with this short 'holiday', although generally docs follow Tymlos/Forteo with something. Might worth discussing with your doctor.

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@mayblin Thank you…I was pleased with my gains, though my numbers were pretty dismal when I was diagnosed 4 years ago. I’ll take any gains. My new doc ordered bone markers prior to beginning Evenity next month. My cardiologist is the one who ordered my hormones but did not do bone markers prior to beginning. I did have a slight gain of 3.4% in my spine and 2.4% in my hip even after a month off Tymlos before my Dexa in July. So I’m praying this 3-month drug holiday won’t cause me to lose too much of my gains. I’m increasing my bone loading and weight regimen, and hope my new hormone therapy will hold my gains.
I am the one responsible for not beginning another drug before now, as we are heading out of the country for a vacay and I didn’t want to deal with any new side effects while away. We shall see. What a journey we are all on. 🌹

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I’ve just finished 12 months on Evenity and my doctor tells me that it stays in my system for two months. That said, its probable that you’re the same, I wouldn’t worry about a few months

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@fightthisthing

I’ve just finished 12 months on Evenity and my doctor tells me that it stays in my system for two months. That said, its probable that you’re the same, I wouldn’t worry about a few months

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My doctor said it takes 2 months for Evenity to finish "mineralizing" so that info agrees with @fightthisthing

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