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How can I come off 7 yrs of Prolia without using any biphosphonates?
Has anyone found anything else helps to absorb of calcium & minerals & collagen into my bones to build & protect them , after stopping biphosphonates please?
Or Can anyone recommend a top specialist in this area I can contact ?
I am 72years old & 8.5 years ago I suddenly found out I had stage 3+ pancreatic cancer( from extensive pancreatic IPMN cysts ) .. So I had major surgery & chemo which caused oesteoporosis - I was put on Prolia 18 months later after a routine DEXA scan … but then developed ongoing upper gastric bleeds ever since (with no real improvement in dexa scans) !!! Then 4 months ago my endocrinologist strongly advised me to have a zoldronic acid infusion & 3 days later literally almost bleed to death!
I was given a total of 24 units of (O & my A+) blood(compacted red blood cells) & 34 of plasma & blood coagulants. 3 months later my blood iron & haemoglobin levels are still low
Yesterday my endocrinologist suggested fosamax instead , but as I have had upper gastrointestinal & bleeding issues ( which CHPT advises against use of biphosphonates with ) -
He suggested I do my own research into alternative ways to build my bones.. as blood tests showed after 3 months of my infusion, my calcium is already leaching from my bones so bad fractures will be very likely if I do not maintain or improve my bone density now …
I take Creon to digest fats/protein n fats ( no pancreas or spleen or gall bladder or lower stomach etc ) , I take vitamin D n elemental calcium into addition to my healthy diet & feel healthy /with good immunity .
THANKS for want to help !!
Anne
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That is really remarkable that you beat stage 3 pancreatic cancer and feel healthy and good now. Well done. I am wondering about whether one of the newer injectable drugs like Tymlos or Forteo might be considered. Or Raloxifene which doesn’t work as well , but which lowers the risk of breast cancer. I also think of getting enough Vitamin K 2 which helps keep calcium in the bones..I do it by eating 1 Tb natto daily, which I buy frozen at a Japanese market . Others take supplement for vitamin K 2
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2 ReactionsI’m truly sorry to say that coming off Prolia without starting another treatment probably isn't feasible. I tried myself after three years on it and seeing no real improvements in my osteoporosis. Eventually, I decided to manage naturally, but Prolia had already taken its hold on me. My doctor didn't warn me about the rebound effect or mention I’d need to follow up with another medication, so a year after stopping, I suffered three compression fractures. Since then, I’ve tried every medication imaginable, but Evista has been the one with the fewest side effects for me. I can't do biphosphonates either.
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6 Reactions@maymore Wow, that's awful. How is it that our "health care providers" are so remiss???
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1 Reaction@babs10 My PCP doctor has only 65+yo patients. I think that is a key factor to getting better care for health issues that occur more in older populations.
It is amazing how many health issues each doctor must know about. And things keep changing, new studies about osteoporosis have come out in 2025 for example.
My husband finally changed to a doctor who sees only older patients also.
My doctor knew lots about osteoporosis and agreed to put me straight on HRT with transdermal patch + oral progesterone.
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3 Reactions@maymore That’s so unfortunate that your doctor didn’t warn you about the rebound effect. I had no idea about it either until I joined this forum and read about it here. Thank you for sharing your experience and I hope you never suffer another fracture again.
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3 Reactions@oopsiedaisy The website and brochures for Prolia tell you about the rebound.
I take Bone-Up and Bone-Up Ultra in addition to the Prolia. I also add Vital Proteins Collagen Peptides. I've added these to my Prolia injection therapy since chemo, radiation and 5 years of Letrozol for Breast Cancer. The results went from -4 on Dexascan to mostly Osteopenia. Recently, due to a dental implant, I went off the Prolia. I will not go back on it for 13 months, until the implant and crown are secure. I continue my Bone-Up and Collagen Peptides. I also purchased AlgaeCal Plus. I take one occasionally mid-day between my other supplements. Hoping it will maintain my bones until I can get back on the prolia. It is also important that we do strength training while taking these meds. Without weight bearing exercises, our bones become less dense and brittle. Thigh bones often fracture unless we continue to exercise.