Attempting to transition off PROLIA…

[Arie4]

I’m feeling quite overwhelmed with the volumes of great information. I do appreciation as I got none of this from doctors

I’m conflicted more than ever on how to get off PROLIA without losing bone strength & avoiding potential side effects of various Busphosphonates: AA, Zoledronic acid, Actonel.

I’m nearly ready to just quit all OP medication & concentrate on exercise, OsteoStrong, nutrition.

Spine -2.8

Hips -2.2

Femoral neck -3.1

[Met00]

Please don't stop Prolia without going onto another osteoporosis medication (almost certainly a bisphosphonate). The risk of rebound spinal fractures is high without a relay medication, and can last up to 2 years!

[DiscoLover]

I just met with my Rheumatologist today to follow-up on all the blood work he had done at my first visit 3 weeks ago. He said the bloodwork was to check to see if there was an underlying medical cause (i.e. secondary cause) for why I have severe osteoporosis at the “young” age of 56. All the bloodwork came back normal and I asked him why I have severe osteoporosis and he said that most likely it is just due to being a short, petite body frame woman. Because my bones are smaller, when I shed “old” bone tissue (which increases with age) there is less bone with healthy bone tissue available to make up the difference than a person with larger bones. He wanted me to start taking Evenity but I have a heart valve problem and Evenity has a Black Box Warning on it that people with heart valve problems or who have had strokes or heart attacks in the past should not take it. So, his next recommendation was Prolia. I did research on this drug prior to the appointment and told him I am too scared to start it due to the long list of possible side effects. However, he did tell me (and my research confirmed) that if I started taking Prolia and then went off of it I would need to start taking a bisphosphonate immediately or any benefit that the Prolia provided to me would be completely lost, plus the risk of rebound fractures would increase exponentially. I asked him how long I would have to take the bisphosphonate and he said a few years and then he would recommend a “drug holiday” but only if my bone density improved enough. If it did not improve enough, he would start me back on Prolia for a few years and then alternate me with Prolia and Bisphosphonates for the rest of my life. This is one of the reasons I told my doctor I did not want to start Prolia because basically the cycle of drugs might never stop once I start that medication. Also, I have no idea if I will be able to tolerate Bisphosphonates without having a lot of side effects (and there are a lot of them) and if I can’t tolerate them, I would basically be in a very bad situation because I have to take them after being on Prolia or my bones will be more prone to break than before I took the Prolia. I know you are worried about side effects of the Bisphosphonates but since you have been on Prolia for several years I would certainly talk to my doctor about what the expected negatives are if you do not go on a Bisphosphonate. Good Luck with your decision. I hope everything works out for you.

[Cologne1 in reply to DiscoLover]

Like you I was diagnosed with osteoporosis at a young age. I was 53. My Gynecologist sent me for physical therapy and I was put on a Bisphosphonate drug. After a year I was sent to a Rheumatologist to check for secondary osteoporosis. Most of the blood work came back fine. The doctor pointed out that since I was petite and very small boned she felt that my osteoporosis was genetic and that I probably had low bone mass my whole life. I was on the Bisphosphonate for almost 11 years and had very little improvement and I had heartburn almost from the beginning which is one of the side effects. But not everyone has that issue with those drugs. I wanted to get off of it and my Gynecologist said my numbers were not good enough to take a break and I had to tough it out. My primary doctor felt I needed to take a break from it and did not like the Gynecologist's philosophy of toughing it out. Finally I just stopped taking the medication and my Gynecologist suggested Prolia and gave me a brochure. Well the side effects were horrendous and like you I was scared to go on it. Some time later I joined this site from American Bone Health and found out that if you stopped Prolia cold turkey you could sustain a spinal fracture and had to go immediately on a Bisphosphonate after stopping Prolia. The doctor never mentioned this to me but I think no one knew about it at that time. So I felt I had made the right decision not to go on it. I have been off medication for 10 years. I knew I was taking a chance but was so overwhelmed with all the information and did not know which way to go and decided to stop all medication. I recently had a Dexa scan and have lost a little more bone but I was not very surprised. We all are struggling trying to find the right thing to do for our bodies. You have to consult with the doctors and decide what is right for you. I wish you luck and hope it all works out well for you.

[Grandk23sc]

You are not alone-The information is overwhelming and I find the HCP's to be lacking in their explanation of the disease and treatment. My osteporosis was secondary to a parathyroid tumor. I just didn't ask enough questions and blindly accepted that the treatment was needed. Keep looking for answers and advocate for your health. I wish you well