Prolia treatment for osteoporosis: What is your experience?

Posted by Veruska @veriska, Mar 7, 2017

I received the results from my bone test and they have recommended I start Prolia. I have read the side effects and I am concerned. Has anyone use this drug and if so what side effects have you experienced. Thank you

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@windyshores

@cher51 I have been told by all doctors that osteoporosis is not painful. Until fractures that is. Perhaps you have osteoarthritis? An autoimmune disorder? Are you seeing an endocrinologist or rheumatologist?

I have not heard that high blood pressure leads to dialysis though it can affect the kidneys. Are you being seen by a nephrologist?

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I saw a rheumatologist for 10 years and was diagnosed with inflammatory arthritis. I was put on methotrexate and that definitely helped. However, my liver reacted to it in a negative way and I was taken off it. I had my bone density test and have osteopenia and on borderline of osteoporosis. I looked up Osteoporosis just now (again) and will attach it. Also, my friend who is on dialysis did not take medication for it, ended up with hypertension and it affected her kidneys. Look up ‘link between hypertension and kidney disease’.

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@cher51

I saw a rheumatologist for 10 years and was diagnosed with inflammatory arthritis. I was put on methotrexate and that definitely helped. However, my liver reacted to it in a negative way and I was taken off it. I had my bone density test and have osteopenia and on borderline of osteoporosis. I looked up Osteoporosis just now (again) and will attach it. Also, my friend who is on dialysis did not take medication for it, ended up with hypertension and it affected her kidneys. Look up ‘link between hypertension and kidney disease’.

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Note: To make my sentence clear, my friend did not take medication for her high blood pressure, hence she ended up with hypertension which affected her kidneys. She has been on dialysis for over 10 years. No fun at all.

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I've been on Prolia for two years without any side effects that I'm aware of. I've seen an increase in all my checkpoints except the femur neck, which is where most breaks occur. I'm hoping that area will increase too with time. Prolia is convenient because it requires only a shot every six months.

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I just got my first dose, I had, bone and muscle pain after , then shortness of breath with jaw and teeth pain then high fever, dry cough, runny nose, constipation, elevated blood pressure and UTI.Just miserable.I have a history of multiple allergies including the covid vaccine that landed me in the hispital.I should have not taken the prolia.My sister is 97 with osteoporosis and still moving around using a cane.Will not take that again.

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@meiling994

I just got my first dose, I had, bone and muscle pain after , then shortness of breath with jaw and teeth pain then high fever, dry cough, runny nose, constipation, elevated blood pressure and UTI.Just miserable.I have a history of multiple allergies including the covid vaccine that landed me in the hispital.I should have not taken the prolia.My sister is 97 with osteoporosis and still moving around using a cane.Will not take that again.

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Will you be on a biophosphonate?

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While on Prolia I didn’t have any side effects related to the injection itself but I had a fractured femur due to a fall and, a year later, 2 other fractures that were spontaneous. So, I was taken off Prolia and started on Tymlos. On Tymlos for 9 months now. The plan after Tymlos is Reclast.

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@sungal what will you do after Prolia and does your doctor have advice for avoiding rebound? Or will you stay on it forever?

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@windyshores

@sungal what will you do after Prolia and does your doctor have advice for avoiding rebound? Or will you stay on it forever?

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windyshores, I haven't talked with my doctor about this yet. However, I have a friend who's an internist and a sister who's a pediatrician. They're both on Prolia, and they tell me they're planning to stay on it after 5 years. We're all older though, 70s. If someone is younger, they may want to make a different choice. Lots depends on how things unfold as the medical establishment and we "guinea pigs" wait to see what longterm effects, if any, arise.

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@sungal

windyshores, I haven't talked with my doctor about this yet. However, I have a friend who's an internist and a sister who's a pediatrician. They're both on Prolia, and they tell me they're planning to stay on it after 5 years. We're all older though, 70s. If someone is younger, they may want to make a different choice. Lots depends on how things unfold as the medical establishment and we "guinea pigs" wait to see what longterm effects, if any, arise.

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@sungal some are staying on Prolia 8-10 years apparently but for those of us in our 70's, that means into our 80's and then stopping and doing Reclast....When I am 80+ I would consider Prolia if it was tolerable and if the effect on immune system is okayed by research and MD's (I have lupus). I have a friend who is 83 and taking it for the rest of her life, apparently. She has not been told about a need to stop or rebound and follow-up and I did not enlighten her 🙂

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