Support For Those Quitting Prolia

If your T-score is -4.2, you can't just stop all meds.

I appreciate learning of everyone’s experiences. I’ve been on Prolia for two years, (4 injections)with no side effects to date. I had three spinal compression fractures in 2023. I will have a Dexa scan next month. I did get a bit stressed when I needed a root canal. I know having an extraction or implant is not an option on Prolia. The edodontist said even if he sent me to an oral surgeon he would refuse treatment because Prolia can cause complications. The endodontist had me start amoxicillin two days before the root canal and continue thru ten days as a preventative measure. He also put in calcium into the tooth with a temp seal. I will return to learn if this has worked. If not the option is to remove the tooth above the gum line, stitch the gum closed. The body will eventually absorb the part of the tooth that is left. My regular dentist said that is a procedure that is used sometimes in my situation. If the tooth is stable, a new crown will be next. Oral meds are not an option because I have a hiatal hernia and take Prilosec.

Hello Michael!
I hope this finds you well!
I am strongly considering trying Evenity (severe T-Scot lumbar spine especially, and unfortunately also taking an aromatase inhibitor post breast cancer, which isn’t helping). Evenity seems to be best shot at reversing this rapid bone loss, though I’m scared to begin.
I just did a consultation with Keith McCormick who disagreed with Evenity and really feels I should do three years of Reclast (while on Letrozole) before starting Evenity. Any thoughts on that? I also noticed in your posts that Evenity didn’t help you as you’d hoped.

Thanks!

I am wondering about Prolia and I am here for information. I was going to start with Forteo or Tymlos for 2 years and then on to Prolia. Sorry not related to coming of Prolia but I am very concerned about that and I just feel like there has been enough time for good data. This is so hard and scary! So the 73 year old 3 fracture including pelvis and L1 and T11. This is so hard and everything seems to be conflicting. I almost feel like it's a clinical trial and 20 years on Zoloft which was supposed to be safe gave me a horrible auto-immune that eats at your bones.

Perhaps you can share a bit more info on this thread. Age, dexa scores, what you physician is saying about drug plan and sequencing of these drugs, anything else that might help us understand your situation. Thanks

I am also looking for as many people as possible to tell about their health issues with OA and OP. I have both, and in remission after 13 years with RA. Suddenly for me...after stopping Prednisone, my upper body - my hands became swollen and painful - hands/wrists, lower arms/shoulders. This is after DX of OP and in need of hip replacement surgery as it's bone on bone. Assume, now they...are going to give me a choice of biologics. All that I have read about that leaves me anyway, terrified. Not one is safe nor claim to be but I mean, this disease has been with the human race probably since the cave man. So it is what it is. Roll the dice maybe and just take it, seems to be on the menu - to keep us going. I am 84 soon 85 Dec 4th. Artist. Was, till now. Turn to what I love, music and literature and my family and kitty for comfort. Hope to hear from someone soon, thank you ! Cynthia

I used Forteo when the recommendation was to use it for 18 months. I had no issues with it and had great results. I tried Reclast after that and had terrible jaw pain. I had already tried all the other bisphosphonates and had terrible side effects. I did fine for close to 20 years. Now I have severe osteoporosis...again. I had some pretty ugly pain after my 1st Prolia injection. Not sure what to do now.

Can you clarify the sequencing of those drugs and whether there were gaps between different meds.
Did you have a stretch of time without any Osteoporosis drugs?

I tried pretty much all the bisphosphonates first and they gave me terrible GERD. I tried Evista but was concerned about the blood clot risks do to family history. I had a compound wrist fracture and that is when I did the forteo. The Reclast was was at the interval they recommended. I refused Prolia at that time and did vitamin d and not much calcium because I have Sarcoidosis. And a lot of walking. My bone densities were good until about 6 months ago. A gas of about 15 years I think.

I am actually not at a deciding point yet. I have a great spinal orthopedic doctor that I was actually seeing for kyphosis. My last bone density had osteopenia, and I haven't followed up like my rheumatologist wanted me to to get another one 3 years ago. I saw her after I fractured my pelvis. It was actually after a hip doctor didn't read an MRI until after I had finished my physical therapy which he didn't realize was a pelvic break. He was white when he came in the room. He had had the MRI for 3 months. I should have done swimming, bed rest, and walker. None of those. Just straight to physical therapy. Just a vent. The rheumatologist tried to scare me onto Fosamax. I took it once and quit. That was 3 years ago. Another freak fall. Fractured my L1. My T11 showed up after that and I have no idea how I fractured. I have been doing tons of research before I move on anything. I trust my Spinal doc. His mom is on Prolia after being on Fortea. She has osteo. AT Scripps in San Diego you go over your options with a pharmacist. Pros and cons, lifestyle, supplements. I really am kind of amazed that they are more holistic. They really want the patient making the choice after being informed. I don't think I have a choice. But bums me out is the quality of your bones after 10 years is then shot and you go on something like Fosomax. I even heard a department head of UCSD who specialized just in osteoporosis say that really at this point they really are in an unknown territory. Not enough time to know. And it was 20 years into an SSRI that everyone seems to be on that they found out some awful side effects and no one really is aware of them. One being bone loss! and another is a wicked autoimmune that I now have that has really effected bone loss!. I HATE drugs. But I have to have them for being bipolar. They saved my life literally. At 73 I am only on psych drugs. That's it.