Prolia treatment for osteoporosis: What is your experience?

@contentandwell Have you researched Boron it is a mineral for bones along with Calcium.magnesium VitbD3 VitK of course your health team it has amazed me

@lioness. I think if my endocrinologist thought it would help she would have mentioned it, she knows I am very ambivalent about the drugs. I will mention it to her though. Thanks.
I just googled and we need very little boron, and many foods that I consume contain it so I suspect I don’t need to supplement it.
JK

I understand you won the “this stinks” lottery. I cannot blame you for how you feel. I won a couple of the cancer lotteries, so I really do understand. I still try and look at new things objectively and not color everything with that brush. I wish you a timely recovery.

I had one injection of Prolia and the results were TERRIBLE. Prolia hijacks your immune system to build bone; they don't tell you that ahead of time. So, I had an ear infection for 3 months. The ENT doctor told me about the hijacking and said to NEVER get this shot again. If you are susceptible to infections, like getting colds easily or having every little cut become infected, DON'T get it. It's in your system for 6 months or more, and there is no antidote. You just have to wait it out and suffer the whole time.

After the Prolia disaster I took the RECLAST infusion, only 1/2 dose since it is in your system for 6 months and longer. I have digestive issues (lactose intolerance, fructose malabsorption, etc.) and the doctor said it wouldn't affect my stomach like the bisphosphonates pills. Wrong! I had HORRIBLE side effects, not just gastrointestinal issues but dozens of others. This is the worst medicine I've ever had and I think it should be removed from the market. Either that or they should learn how to tell if someone shouldn't take it ahead of time, since there is no antidote. You can find a list of the side effects on the Mayo Clinic site - look under drugs, and type in zoledronic acid. The list is 3 or more pages long! Besides trashing my G.I. tract (I had had it all under control before this), it screwed up a bunch of other body systems. I couldn't even plug a cord into an outlet without getting out of breath. The first time I couldn't get my breath back for 2 days so finally went to the ER. They found nothing so I know it was that (plus it happened multiple times after that). I bought a can of aviators oxygen from the Harriet Carter catalog and have used that multiple times to get my breath back. My bone density only increased 3% for all I had to go through. I got the infusion in April 2019 and am still not back to normal. Have you tried Forteo? That is a drug you inject into yourself daily. That has the advantage of bypassing the GI tract plus you can quit anytime if you need to. Anyway, never again for the 6 month drugs. My next plan is to try an oral bisphosphonate you take weekly or monthly. Good luck with whatever decision you make!

@Good Afternoon @lelia, Thank you for sharing your experience with treatment options for osteoporosis. We are all helped by your knowledge and can trust your personal evaluation. We also know that everyone is different and some have had positive results.

I note that you are thinking about a monthly oral bisphosphonate. My experience was not good and waiting a month to get over the bone pain in jaws, eye sockets, rib cage, was somewhat torturous. It was decided that none of the bisphosphonates would work for me.

I chose Tymlos, a daily injection so I can see how it goes day to day. It actually goes very well. No side effects. No refrigeration. The product is stable at room temperature.

Good luck with your advocacy for better medications. Let us know of your decision and progress. Chris

Thanks for your suggestion.

If you want to read reactions to Reclast from lots of people, go to Drugs.com. It's not just me.

Happy the Tymlos is working for you. I had stomach pains that were very painful for 2 weeks after first shot. I'm about to start Prolia in 2 weeks. Hoping not to have any side effects. Thank you for posting.

I've taken 2 Prolia injections over the past year & now have a Rheumatologist. In N Dakota they are few & far between to find an Endocrinologist so my PCP sent me to Minot 3 hrs away to the Rheu. This Rheumatologist is adamant about me going on Reclast eventually but after reading what others have gone thru having that infusion, I'm pretty sure I won't take him up on that. He is from India in case that has any bearing on his choice between Prolia & Reclast.....he talks about the cost of Prolia being out of sight & says its only once a year for Reclast. I dont care about the cost as my 2 insurances take care of it....last Prolia injection 4 mos ago was $6,202.....insurance pd. How crazy is that for HIGH cost of a med. I'm 118 lbs & do worry about bone loss. Haven't had a 2nd Dexa Scan since my 1st Prolia one yr ago. Need to do that to see if Prolia is helping bone density. So will do that prior to April when I need to choose P or Reclast.