What comes after Evenity?

Posted by laurensb @laurensb, Dec 1, 2023

I have been been on Fosamax for 6 years total starting in 2009 with various drug holidays during the years. I was on Raloxifene for 3 years. Started Evenity in June. What are people taking after the year of Evenity is up?

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@drsuefowler

Windyshores,
How are you doing so far on Evenity?

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@drsuefowler I had to postpone my Evenity until 12/21. I will let you all know. I am getting over a severe bout of COVID that landed me in hospital one night. Getting better!

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@windyshores

@mayblin what an interesting idea! The liquid version of Fosamax...

I have been told that Reclast is much more potent. After the 20% test dose, I am supposed to tell my doc what dose I want after a month of evaluating tolerability, and that second dose would be three months after the first. I have read that a half dose is as effective as full dose (sorry can't cite right now).

Keith McCormick thinks I could do a 20% dose every three months.

I am going to look into this idea of a liquid form of Fosamax. I wonder if, chased with water, it would pass through quickly enough to avoid affecting the esophagus. Or maybe the liquid will coat the lining and be worse than a pill that passes through. At any rate, thanks for the idea!

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I'm trying to figure out what to do after my forteo, maybe I will have another year of it. If not, and if fosamax liquid form is a viable choice for me, then I'd have 2 bisphosphonates to choose from.

If I remembered correctly, the solution of fosamax (100ml) is followed by 60ml of water (compare to 240cc of water for tablet form), so esophagus shoud be clear of meds quickly. Your thought of liquid medicine may have actually give the active ingrient a chance to have closer contact with stomach lining is a good point. If this is not a concerning issue, then liquid generally have a lot faster gastric emptying time than any solid or semi solids hence a less gi irritation. Finding gi side effects rates in liquid vs tablets may give a clue.

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@windyshores

@drsuefowler I had to postpone my Evenity until 12/21. I will let you all know. I am getting over a severe bout of COVID that landed me in hospital one night. Getting better!

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So sorry to hear you've been sick, but glad you're on the road to recovery. Good luck with the Evenity infusion.

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@drsuefowler

So sorry to hear you've been sick, but glad you're on the road to recovery. Good luck with the Evenity infusion.

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@mayblin , @windyshores please keep these posts going as you figure or think things out. Though I haven’t yet, but soon start Forteo , I’m already thinking about my follow up drug for maintenance. Thank you for drilling down so deep in these areas!!!!

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As you may know @ans I did two years Tymlos with excellent gains. Spine gained 20%, went from severe to borderline, hip gained 9%, but femur neck went from -4/1 to -3.6 and I wanted a last boost from Evenity so I have done 4 months (full dose, half dose, half dose, full dose).I am having an unusual reaction to Evenity (burning, prickly) and will probably stop there. I may ask for a DEXA and would pay out of pocket. My last one was a year ago. It would be great if I could share results from this sequence. My P1NP did not show bone growth and CTX has remained low.

Next step, as doctor's suggestion, is 1 mg Reclast (20% dose), IV hydration, slow infusion, with tylenol. I let him know in a month how I did and I can determine the dose I want for an infusion at 3 months (or even 6 months). This is basically like having liquid Fosamax only bypassing the GI tract.

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@windyshores

As you may know @ans I did two years Tymlos with excellent gains. Spine gained 20%, went from severe to borderline, hip gained 9%, but femur neck went from -4/1 to -3.6 and I wanted a last boost from Evenity so I have done 4 months (full dose, half dose, half dose, full dose).I am having an unusual reaction to Evenity (burning, prickly) and will probably stop there. I may ask for a DEXA and would pay out of pocket. My last one was a year ago. It would be great if I could share results from this sequence. My P1NP did not show bone growth and CTX has remained low.

Next step, as doctor's suggestion, is 1 mg Reclast (20% dose), IV hydration, slow infusion, with tylenol. I let him know in a month how I did and I can determine the dose I want for an infusion at 3 months (or even 6 months). This is basically like having liquid Fosamax only bypassing the GI tract.

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windyshores,
When do you have your Reclast infusion? Mine is scheduled for June. Anxious, of course.
I have bounced back and forth between endocrinologist and rheumatologist as each of them alienates me. 🙂
Both of them prescribed Evenity and then Reclast. They also know each other.
The good thing, I know, is that they are in agreement.
After the endocrinologist recently made me angry, I returned to the rheumatologist who was more engaged. This created an internal conflict in which I agonized over which doctor to stick with. Good grief. So, I think I will see both of them. The rheumatologist is going to administer the Reclast in his office.

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I recently finished my 1 year of Evenity. Six weeks later I had a Reclast infusion which I’ll have for the next 2 or 3 years.
From me reading my own report it looks like Evenity did its job. I see my rheumatologist in a couple of weeks to confirm. Good luck to you.

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@gammyb

I recently finished my 1 year of Evenity. Six weeks later I had a Reclast infusion which I’ll have for the next 2 or 3 years.
From me reading my own report it looks like Evenity did its job. I see my rheumatologist in a couple of weeks to confirm. Good luck to you.

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@gammyb This is very good news for you. I have 6 more months of Evenity and I'm hoping for the same good news you received and moving on to the next step. which will likely be an infusion similar to yours.

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My doc says to wait 2-3 months after Evenity to do Reclast. (After Tymlos, it is right after the last injection.)

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@gammyb

I recently finished my 1 year of Evenity. Six weeks later I had a Reclast infusion which I’ll have for the next 2 or 3 years.
From me reading my own report it looks like Evenity did its job. I see my rheumatologist in a couple of weeks to confirm. Good luck to you.

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gammyb,
Thank you. This is encouraging.
Good luck to all of us on this
Complicated journey.

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