1. < Osteoporosis & Bone Health

The Doctors Reply after Prolia AFF and now recommends Forteo

Posted by sbax75 @sbax75, Oct 23 3:57pm

Your thoughts are appreciated: On Prolia six years: Three weeks ago I had a A-typical fracture. After the fracture, I suggested Reclast to my endocrinologist, after she wanted me to go on Tymlos. Insurance denied that and now she wants me on Forteo. This is what she replied to my question:
" "The reason why I didn't want to go with Reclast is that it is a bisphosphonate, which carries the highest risk of atypical femur fractures. Ongoing exposure to bisphosphonates only put you at higher risk of fracture of your other femur.
Yes, typically reclast/bisphosphonates are recommended after Prolia, but not in cases of atypical femur fracture unless both femurs were surgically operated on and fixed." " Does what this Doctor writes above make sense?
Please share your insights into next steps.

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hlp123 | @hlp123 | Dec 1 5:33pm
In reply to @bayhorse "This discussion is scaring the heck out of me. I am just about to finish my..." + (show)
@bayhorse

This discussion is scaring the heck out of me. I am just about to finish my two years on Tymlos, and my doctor said I should go on Prolia next. I have severe osteoporosis and also severe and very painful lumbar stenosis; I'm 72 years old, weigh 90 pounds and guess that if I start Prolia, have trouble with it, and have to stop it, I'd be an ideal candidate for spinal fracture. As to my other drug options: I have a heart issue -- it's controlled by a pacemaker, but my doctor has ruled Evenity out nonetheless because of listed cardiac side effects. I have had density gains on the Tymlos, but I also had nausea with every shot every day, so am worried about side effects from Reclast, which I believe would be in my system long term. So I have fears about all of the three post-Tymlos treatments that were mentioned to me in my last visit to this physician.

Does anyone know if oral bisphosphinates do any good after one has been on Tymlos? Moreover, does anyone out there know of a truly good osteoporosis expert in Austin, Tx.? Or even in the Houston area? I am looking for an expert in the field. I have a multitude of autoimmune issues, already suffer a variety of drug side effects, and seriously don't want to add to the load with the wrong osteoporosis drug.

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I understand completely how you feel. After one year on Prolia, followed by a year on Reclast, I was told that the gains from Prolia would now be permanent. My recent Dexa scan showed that after two years since my year of Reclast. my bone density is 20% less than before I took the Prolia. I need to get some help for my bones, but I have no idea what to take since every medication has side effects and I had such severe side effects with Prolia. It is all very confusing. I am looking for help that is not worse than the current situation. Thank you, Good luck to us all

REPLY
gently | @gently | Dec 1 6:15pm

bayhorse, saved by the heart. Some physicians are prescribing a third year of Tymlos. You could check your gains and ask for bone markers to see where you stand. If CTX is high, stopping Tymlos for 6 or 12 months taking an oral bisphosphonate during that time would set you up for a third year of Tymlos or Forteo.
The nausea is probably caused by high serum calcium which you can alleviate by modifying your D3 and/or Calcium intake so that the serum levels aren't elevated by supplementation. Alternately you might lower the dose of Tymlos to 60 or 70mcgs.
It is possible to take a lower dose of Reclast. Windyshores has low dose expertise.
University of Houston has Dr. Laila Tabatabai. I've heard she is excellent, but look at her bio.
Alendronate (Fosamax) and Risedronate (Actonel) can preserve the Tymlos-bone.
I'm on Forteo and will start a third year. My plan is risedronate intervals and more Forteo or Tymlos. I'm avoiding Evenity and Prolia.

REPLY
windyshores | @windyshores | Dec 1 7:25pm
In reply to @bayhorse "This discussion is scaring the heck out of me. I am just about to finish my..." + (show)
@bayhorse

This discussion is scaring the heck out of me. I am just about to finish my two years on Tymlos, and my doctor said I should go on Prolia next. I have severe osteoporosis and also severe and very painful lumbar stenosis; I'm 72 years old, weigh 90 pounds and guess that if I start Prolia, have trouble with it, and have to stop it, I'd be an ideal candidate for spinal fracture. As to my other drug options: I have a heart issue -- it's controlled by a pacemaker, but my doctor has ruled Evenity out nonetheless because of listed cardiac side effects. I have had density gains on the Tymlos, but I also had nausea with every shot every day, so am worried about side effects from Reclast, which I believe would be in my system long term. So I have fears about all of the three post-Tymlos treatments that were mentioned to me in my last visit to this physician.

Does anyone know if oral bisphosphinates do any good after one has been on Tymlos? Moreover, does anyone out there know of a truly good osteoporosis expert in Austin, Tx.? Or even in the Houston area? I am looking for an expert in the field. I have a multitude of autoimmune issues, already suffer a variety of drug side effects, and seriously don't want to add to the load with the wrong osteoporosis drug.

Jump to this post

@bayhorse there is a black box warning of cardiovascular risk with Evenity which your doctor no doubt saw. However two cardiologists told me it was fine (I have afib).

If you read the actual studies, Evenity and placebo had equal cardiovascular risk. Alendronate (Fosamax) was slightly better but it has been theorized that is because alendronate is slightly protective. Maybe you can get a second opinion on Evenity.

I did Tymlos, then Evenity (4 months) then Reclast (low dose). My doctor won't use Prolia at all due to rebound.

If you can handle oral bisphosphonates they can be effective after Tymlos. I have GERD and so do Reclast.

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