Need Advice - What drug to Follow Up Evenity

Hi @prehorselover - If you have a good response to Evenity and you have not had any adverse events, I would go with option 1. Take alendronate for two years and get rechecked. If you want to go further, go on Evenity again, but I would take a one year break (no drugs) before hitting Evenity again. This will allow Fosamax to wear off a bit making Evenity a more effective. The nice thing about option one is that you are limiting your exposure to just two drugs.

I like Fosamax better than Reclast because the effects do not last as long when you stop. The theory is that your bones will be able to repair areas more effectively during your drug holiday (no drugs) and the osteoanabolics will work a bit better after the break.

If you do take Fosamax, I highly recommend you wait 2 hours and not just 30 minutes before eating (or drinking anything but water). This is how the trials were run and it allows up to 40% better absorption (you can read this in the package insert). Another tip - drink only RO or distilled water for that two hours. Calcium in water will deactivate Fosamax to some extent. Mineral water and Mountain Spring water have the highest calcium content so stay away from those for that 2 hour period. They are great choices any other time.

If you don't have good results, option 2 might be the best choice.

Also, when you get your DXA scan, ask if they can include a TBS score. That will be helpful for your decision.

I wish you the best of luck!

Mike

Interesting. I didn’t know Fosamax was an option. I thought Evenity had to be followed by Prolia and then Reclast or straight to Reclast.

The Rheumatologist I saw twice, recommended Prolia for the rest of my life. She didn’t tell me about the rebound effect. I had to find that out on my own. I don’t trust her opinion.

I like the idea of repeating Evenity. I had zero side effects from Evenity. What would you consider a good result from Evenity?

Thank you so much!!

The main trial for Evenity had a follow-on treatment of Fosamax (alendronate). Attached is a slide from my presentation that shows the Evenity trial results. If you get close to the 6.2% gains in the hip, that would be a great result. Even if it was ~5%, I would call it a success.

I just started alendronate in March, but I know little to nothing about my dexascan results because I don’t see my dr until May 22. Part of the reason is because I had emergency hospitalization and surgery. Any advice on what specific questions I need to ask?

Hi @shoover2804 - I recommend you get some of the basics down before your appointment. Here is a recorded training based on my experience and research I gave to the BHOF osteoporosis support group Bone Buddies to help people just like you https://youtu.be/Z4uXAsnhSaA?si=TfBeqsMPc1QDFXCP . We have all been there.

If you can get and a copy of your DXA report and share the T-scores before your appointment, we could give a bit more specific advice based on your T-scores. There is a lot of experience in the members here.

It's good for you to get smart to help your doctor make sound decisions for your best treatment.

Good luck! Mike

I finally got the DXA results:
Right hip -2.2
Left hip -1.5
Lumbar spine -1.9

Impression: Severe osteopenia of the right hip, as well as moderate osteopenia of the left hip and lumbar spine.

Old DXA
Right hip -3.1
Left hip -3.0
Lumbar spine -2.5

The rheumatologist ordered Prolia. After my appointment, I had a few follow-up questions, because I was having second thoughts about taking Prolia. I asked the doctor’s assistant to relay questions and add CTX and P1NP to the blood text order. The assistant never got back to me. He doesn’t return calls. I’m frustrated. I would love your opinion.

I'm posting for the first time in a couple of years about this question of follow-up treatment after Evenity. I think I was one of the first people on this site to have completed the 12 month course of Evenity injections. My treatment was considered very successful with scores decreasing from -3.6 and -3.2 to -2.8 and -2.6. I'm 85 years old and had been treated for osteoporosis since my first bone density test when I was 63....mostly with Actonel and then when there was no improvement, with one Prolia injection. Within days of the Prolia injection my sense of taste was weird. I could taste things, but there was some sort of overlay that affected it (coffee in particular tasted terrible), and it took 4 years to return to normal. I no longer was willing to continue with Prolia after that first injection. At this point, my regular provider said that since meds weren't helping after 18 years, it was up to me to decide to continue with Actonel or not. I discontinued it and then a couple of years later, I was counseled to try Evenity, a new treatment on the market. My ENT was pleased with the results, significant improvement: -2.8 and -2.6. She recommended that I follow up with a yearly infusion of Reclast. I didn't want to do that since the 6-month Prolia injection affected me adversely and to me, infusion sounds like chemo, so I went back on Actonel instead. Now, two years later, my latest DEXA shows a decrease and she wants me to do the Reclast.
Some other facts: I had undiagnosed asymptomatic celiac disease only discovered during my first colonoscopy at age 63. This was most likely the cause of my osteoporosis. I haven't had any fractures in years, despite being klutzy.

@celiamarypatriciafrancis
I am 77...doctors over the years have wanted me to take bone medicine. Years ago...one week on fosamax
And I could hardly get out of bed! That was the end of that!
Now, at 77...my Dexa number at my femoral neck
is -3.5. Yes, now I am willing to address it...my doctor has suggested evenity...2 injections every 28 days for 1 year...followed by Reclast to maintain gains in bone. I am not a drug person...
I wish you well on your journey!

I have avoided the drugs for years even though my DEXA scan scores were not great. In April I had a fall and broke my right hip. I will begin my journey with Evenity this coming week and my doctor also wants me to follow up with reclast to lock in those gains — that I will hopefully have. I have learned so much on this site and appreciate everyone sharing their journey. Good luck

Thanks for the (somewhat indirect 😉) encouragement to follow through.