Question about osteoporosis drugs

edj3

Hi all, well I met w/ the endocrinologist today--got tests that will sort out whether my bone loss is from something easily addressed. If not, he's mentioned three options:

• Forteo or Tymlos (the super expensive option)
• Prolia
• Fosamax

Pretty sure my insurance company will require me to start at the bottom (less expensive) and if needed work my way up. But before any of that happens, I wondered what your experiences have been with any of thee three drugs.

ElaineTherese

Hi!

I began with Fosamax, and moved to Prolia (when my MO figured out how to get insurance to pay for it). Fosamax was OK; you just had to pick a day during the week (I chose Sunday) when you could take it and wait 30-45 minutes before eating. (Also, you can't lie down after you take it; once you've taken it, you're up.)

Prolia is a shot, every 6 months. I haven't had any side-effects with it.

By the way, I had my bienniel dexa scan last week, and my bone density has improved from full-blown osteoporosis to osteopenia. So, taking these meds has helped me to recover some bone density. Good luck!

Veeder14

Several years ago, way before Cancer, I found out that I had osteoporosis after an evaluation for spine surgery. I started out with Fosamax, a weekly pill and only made it two weeks as my stomach/throat were on fire. This was before my stomach problems.

Next I switched to Forteo which is a daily injection you do for yourself. It worked very well and I gained bone density. No side effects that I remember. I was lucky as my insurance paid for 100% of the cost. I think my doctor had to justify why I couldn't take the Fosamax or other osteo pills and needed Forteo. After Forteo (as it's limited to two years maximum), my doctors wanted me to take bisphosphonates to keep the gains made by the Forteo. I refused as I didn't want the side effects.

I waited a couple of years and then started on Prolia. I had 3 injections total. I felt like I had the flu constantly, was achy and just didn't feel good at all. About 2 months before the 4th injection I got an abscessed tooth which needed to be extracted. No dentist would do it stating that it was too dangerous and might cause jaw necrosis. I was given antibiotics several times, while my doctor tried to explain to the dentists that I wasn't at risk. After two months went by, I decided not to get the 4th injection or continue with it. I didn't have another bone density test for some time so never found out if it helped. Since I had then been off the Prolia for 6 months, dentists agreed to do the extraction. Since then I have refused all medication for osteoporosis as either stomach issues or feeling crappy was not what I wanted. Then Cancer and now I'm on Tamoxifen which I'm told is better for the bones than the AL medication. However, my MO sent me to an endocrinologist who wants me to start on Osteoporosis medication. There's no way, I can barely manage the Tamoxifen with these stomach issues and can't take another medication unless there's some life threatening illness. That's my story.

Spookiesmom

My team wanted me to do fosomax, or prolia . I refused both. Reason, after reading here that both DO increase bone, it’s very fragile. And surprise, my PCP agreed with me.My baseline dexa showed beginning osteopenia. 2 years later, full blown on Arimidex. Off all meds, back to normal.

I’ll take my chances, I don’t think the meds are worth the hassle and se.

ctmbsikia

My Mo prescribed Prolia. My DEXA before BC showed OS in my hip and osteopenia in my spine. I was also sent to the dentist first. My insurance company denied the claim in March of this year. I am waiting a little longer to 1-get another DEXA to see if better or worse as it's been a full year taking the AI. and 2-I will most likely have a different insurance next year so will be asking MO in Sept if it can wait until Mar 2020. I'm due back for MRI and a Mammo in Dec. with the BS. I'm still trying to get my follow ups spread out...………..

Meanwhile, doing weight bearing exercises. The best I can figure from reading about OS and not being on any meds at this time, keeping my muscles strong will help protect my withering bones and is something I can do for myself. Not sure if it will make any difference or not. I'll be sure to update later. Good luck to all of you.

edj3

Thanks all for sharing your experiences. What makes this so incredibly frustrating for me is that I've been a runner and done weight lifting all my life I guess the bright side is if I hadn't, maybe this would be worse? Still, frustrating as all get out.