1. < Osteoporosis & Bone Health

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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lioness | @lioness | Oct 25, 2018
In reply to @cherriann "You definitely need a second opinion. If a endocrinologist is not easily available, I would make..." + (show)
@cherriann

You definitely need a second opinion. If a endocrinologist is not easily available, I would make an appointment with another type of medical doctor and get their opinion. It sounds like you have lost confidence in your endocrinologist and it is important that one can trust and talk to whoever is managing your healthcare. I have had osteoporosis for many years and I see a doctor of internal medicine. I took oral medicine for over five years with little improvement in my numbers, and some disturbing side-effects. It has now been over five years since I made decision to stop taking osteoporosis drugs and I might add, I refuse tests to even check my numbers as I have no intention at this time of taking them again! I've felt much better the last five years since going off the meds. I eat a diet for good bone health, exercise, and watchful that I don't do activities that might compromise my bones. My bone health may or may not have improved, but I absolutely will not go back on meds again until there are "proven" better drugs on the market. I don't know how much pain or disability you have due to your osteoporosis, but if it isn't a huge problem, maybe stepping back from the osteoporosis meds for awhile and concentrating only on the treatment for your cancer would be something you could consider. Wishing you the very best, and also my prayers.

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@mauikg I agree with others about getting a new Dr. Never should a Dr do this to anyone she needs to be reported to the AMA I would suggest you concentrate on the nasal ca are you with a ENT Dr? He can guide you future My girlfriend took reclast 1time had severe side effects she stopped did exercises with weights to strength the bones do water aerobics even push of from wall will built strength you need

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mauikg | @mauikg | Oct 26, 2018
In reply to @suze317 "There has got to be a better endocrinologist for you! I live in CT and just..." + (show)
@suze317

There has got to be a better endocrinologist for you! I live in CT and just found out that Yale has a bone center so I’m setting up a consult. Maybe look at the good hospitals in your area and get a referral. You shouldn’t be reduced to tears. You should be hopeful after a visit. Best of luck

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I live in Hawaii and have Kaiser healthcare. I am happy to pay out of pocket, but not sure I could realistically get all the way to Yale. I will check it out thank you!! I am leaning towards letting my nose heal than address this, but with my back its hard to ignore.

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mauikg | @mauikg | Oct 26, 2018
In reply to @cherriann "You definitely need a second opinion. If a endocrinologist is not easily available, I would make..." + (show)
@cherriann

You definitely need a second opinion. If a endocrinologist is not easily available, I would make an appointment with another type of medical doctor and get their opinion. It sounds like you have lost confidence in your endocrinologist and it is important that one can trust and talk to whoever is managing your healthcare. I have had osteoporosis for many years and I see a doctor of internal medicine. I took oral medicine for over five years with little improvement in my numbers, and some disturbing side-effects. It has now been over five years since I made decision to stop taking osteoporosis drugs and I might add, I refuse tests to even check my numbers as I have no intention at this time of taking them again! I've felt much better the last five years since going off the meds. I eat a diet for good bone health, exercise, and watchful that I don't do activities that might compromise my bones. My bone health may or may not have improved, but I absolutely will not go back on meds again until there are "proven" better drugs on the market. I don't know how much pain or disability you have due to your osteoporosis, but if it isn't a huge problem, maybe stepping back from the osteoporosis meds for awhile and concentrating only on the treatment for your cancer would be something you could consider. Wishing you the very best, and also my prayers.

Jump to this post

Thank you!! I agree and am finally feeling more confident to stand up for myself. My Dr, is I believe just way overworked, and can't handle the case load. Its unfortunate.

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1 reply
ritafarmer | @ritafarmer | Oct 26, 2018
In reply to @mauikg "Thank you!! I agree and am finally feeling more confident to stand up for myself. My..." + (show)
@mauikg

Thank you!! I agree and am finally feeling more confident to stand up for myself. My Dr, is I believe just way overworked, and can't handle the case load. Its unfortunate.

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I agree that you should stand up for yourself. I see a rheumatologist for my osteoporosis treatment. Maybe you can continue to look for potential doctors while completing your cancer treatment.

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1 reply
lioness | @lioness | Oct 26, 2018
In reply to @ritafarmer "I agree that you should stand up for yourself. I see a rheumatologist for my osteoporosis..." + (show)
@ritafarmer

I agree that you should stand up for yourself. I see a rheumatologist for my osteoporosis treatment. Maybe you can continue to look for potential doctors while completing your cancer treatment.

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@mauikg I agree with ritafarmer my girlfriend was seeing an endocrinologist so other Dr,s can help besides an Orthopedic.Can you get to Mayo Clinic in Pheonix Az thats clean ser then Yale to talked about?

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mabel343 | @mabel343 | Oct 26, 2018

You are going through too much to tolerate bad treatment by a medical practitioner. Perhaps there are options other than the endocrinologist. I am currently being treated by a rheumatologist for osteoporosis who is considered to be the leading expert in my location. My internist will treat patients with osteoporosis if they choose Prolia, but prefers that those considering Forteo be treated by the rheumatologist. As one who has also undergone chemotherapy, and now Prolia, I can understand that it would be a lot to be undergoing both at the same time. I received nasty treatment from the nursing staff at my oncologist office, and know that negativity in any form is not helpful to enduring treatment and making a recovery.

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twocents | @twocents | Oct 28, 2018
In reply to @cairnmama "I, too, was concerned about the many side effects. I have been on Prolia for 2..." + (show)
@cairnmama

I, too, was concerned about the many side effects. I have been on Prolia for 2 years (ie. 4 injections) and have had no side effects. My latest bone density test showed an increase in density, which is the best part!

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How much of an increase did you have?

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ladybugnik | @ladybugnik | Nov 2, 2018

I have 3.83 spine and 3.31 T scores. I started Prolia today after doing much research. I'm unable to take the tablets and doctor recommended the Prolia. I had it this a.m. and I'm still feeling sick from the injection. Very weak, heartbeat has been fast all day, nauseous and in the beginning, some breathing issues but nothing too bad that I felt I had to report. I'm hoping my body adjusts tonight when sleeping and I wake up feeling better. I also hope my reactions aren't worse tomorrow. Anyone else have a similar experience? Will it get better? Thank you in advance for any enlightening information.

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veras | @veras | Nov 24, 2018

I have received 1 Prolia infusion and very much regret it. I started having pain in my hips and groin within one month and the pain then progressed to my shoulders and neck. Have had skin issues and mouth ulcers. My osteoporosis is a result of taking Anastrazol after my mastectomy. My current Oncologist has not been helpful as far as what I can do about my pain.

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1 reply
lioness | @lioness | Nov 24, 2018
In reply to @veras "I have received 1 Prolia infusion and very much regret it. I started having pain in..." + (show)
@veras

I have received 1 Prolia infusion and very much regret it. I started having pain in my hips and groin within one month and the pain then progressed to my shoulders and neck. Have had skin issues and mouth ulcers. My osteoporosis is a result of taking Anastrazol after my mastectomy. My current Oncologist has not been helpful as far as what I can do about my pain.

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@veras Im sorry for your experience there have been post from people who have had bad experience then some who haven't if your Dr isn't helping find another Dr.you are your own advocate and you know your body .

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