Experience taking Prolia?

I tried Boniva, a biophosphonate in my 40s when I had osteopenia. I had too much bone pain right away so I stopped. 25 years later I’m at the end of the osteoporosis scale, so I got approved for Evenity. My dr said it was the only drug class that both tore down old bone and rebuilt new bone, and that’s what I needed. After a year I had good results.

Then she said I needed a maintenance drug so I didn’t lose my gains. Since I didn’t tolerate a different biophosphonate, Prolia was a good choice as I could take it the rest of my life, once every 6 months. Reclast was one shot a year for 2-3 years only, with a little more side effects. But I had a lot of bone loss and that probably wouldn’t be enough since I’m young, I’d end up on Prolia anyway. She said Prolia was studied more than a lot of the older drugs, and thought I’d do well on it with my other medical conditions. I have the autoimmune disease generalized Myasthenia Gravis, a seizure disorder, neuropathy and some other minor ones.

I always felt nervous considering a new med, but I’ve done my research, talked to my drs, pharmacist and a lot of people online, slept on it, did some more research, and made my decision. I can honestly say I don’t feel bad about any of the choices I’ve made, because I followed this process, and that’s about as good as it’s going to get.
I’ve never had any side effects on either drug except a slight sore arm that I rested a day, and once a shot wasn’t brought to room temp first and I had some flushing. To me it’s been a blessing as I know I did gain bone and am maintaining it. I’m sure it’s the shots and I get 1280mg calcium D&K daily plus exercise

Thank you for this information, I just had my bone density. Iam at the point of making this same decision and trying to do as much research as possible. I also have the seizure disorder and I am on anticonvulsants and I was on steroids and also getting weekly N Plate injections for ITP (low platelets) so I have been considering what would be the best option for me.
I’ve read a lot of negative results about Prolia and so this information really is helpful. My Dr is suggesting Prolia and wants to start the injections when I see her.

Thank you both for your posts, @sungaltoo and @becca13. I’m also struggling with a decision to either begin Reclast or Prolia — am 63 with lumbar score of -3.9, taking Letrozole which has brought it down to that level in a year. Pretty daunted by Prolia’s rebound description (my endocrinologist is recommending it for 3 years, until I stop taking the Letrozole), and somehow Reclast seems like a “safer” choice. But is it really? Really having a hard time with this decision. Grateful for this support group!!!

Prolia caused nasty MRONJ, in my case bone profusions in lower mouth. Infection, pain for a year. Necrosis of jaw. I already had osteoporosis, then had a lot of steroids during chemo, then 5 compression spinal compression fracture - without a fall. No Prolia.

Thank you for this information, I just had my bone density. Iam at the point of making this same decision and trying to do as much research as possible. I also have the seizure disorder and I am on anticonvulsants and I was on steroids and also getting weekly N Plate injections for ITP (low platelets) so I have been considering what would be the best option for me.
I’ve read a lot of negative results about Prolia and so this information really is helpful. My Dr is suggesting Prolia and wants to start the injections when I see her.

Prolia caused nasty MRONJ, in my case bone profusions in lower mouth. Infection, pain for a year. Necrosis of jaw. I already had osteoporosis, then had a lot of steroids during chemo, then 5 compression spinal compression fracture - without a fall. No Prolia.

I started in my early 30,s with thyroid disease, one of 6 children, 3 of us have it. Doctor started me on Alandondrate for bone loss (spelling may be incorrect) in my late 30,s for 7 years. Than nothing...just taking calcium and magnesium and vitamin D daily. I am 70, and was on Prolia for a year or 2...now was switched to Jubbonti as per government plan. I have had huge bone density loss, which I'm sure the thyroid medication has caused. I try not to read side effects of any drug but have noted a host of new "symptoms" since taking these 6 month shots. The worst is shortness of breath...I cycle and walk daily so I thought I was doing well until this. Also my cholesterol has spiked so medication was increased...and I have horrible shoulder pains. Some muscle pain in upper arms and legs. All of which I try to tell myself are signs of aging. I am however very concerned about the shortness of breath.... and concerned with this new shoulder pain. I have read the side effects and understand now the SOB and muscle pains. I wish there was something else we could take because I'm totally creeped-out" by what could happen long term. I appreciate this site and hope to perhaps gather some info" that might help me towards another alternative.

Thank you for this information, I just had my bone density. Iam at the point of making this same decision and trying to do as much research as possible. I also have the seizure disorder and I am on anticonvulsants and I was on steroids and also getting weekly N Plate injections for ITP (low platelets) so I have been considering what would be the best option for me.
I’ve read a lot of negative results about Prolia and so this information really is helpful. My Dr is suggesting Prolia and wants to start the injections when I see her.