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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@contentandwell I find myself in a similar situation. My endocrinologist in a very recent appointment gave me the option of switching to Reclast (it's called Aclasta in Canada where I am) instead of having a fourth Prolia injection. (Although she is of the opinion that my worsening gastrointestinal problems are not Prolia related. However, there is truly no way of knowing unless you stop. And, I think I'm right!). I have read up on Reclast. For me, it has two worrisome common side effects. I have an arrythmia and a severe dry eye problem and probably have minor corneal inflammations frequently. Reclast can cause arrythmias and a some patients get an inflammation of the iris and/or conjunctivitis. Then, there is the issue that the drug stays in your system for 12 months.
On a positive note, the endocrinologist prescribed this treatment for her frail 88 year old mother-in-law who has experienced mild achiness which is temporary and for that the doctor told her to take Tylenol. Also, apparently if you are thin (like her mother-in-law and like me) you can as the endocrinologist put it " coast longer than one year" on Reclast.
Stick with the devil I know?
Forteo in Canada unless you have a private drug plan through your employer or self-insured is $13,000 per year. Imagine how awful it must feel to pay for side effects!
Once again, the endocrinologist used the"F"
word: FRACTURE.

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@sue225

@contentandwell I find myself in a similar situation. My endocrinologist in a very recent appointment gave me the option of switching to Reclast (it's called Aclasta in Canada where I am) instead of having a fourth Prolia injection. (Although she is of the opinion that my worsening gastrointestinal problems are not Prolia related. However, there is truly no way of knowing unless you stop. And, I think I'm right!). I have read up on Reclast. For me, it has two worrisome common side effects. I have an arrythmia and a severe dry eye problem and probably have minor corneal inflammations frequently. Reclast can cause arrythmias and a some patients get an inflammation of the iris and/or conjunctivitis. Then, there is the issue that the drug stays in your system for 12 months.
On a positive note, the endocrinologist prescribed this treatment for her frail 88 year old mother-in-law who has experienced mild achiness which is temporary and for that the doctor told her to take Tylenol. Also, apparently if you are thin (like her mother-in-law and like me) you can as the endocrinologist put it " coast longer than one year" on Reclast.
Stick with the devil I know?
Forteo in Canada unless you have a private drug plan through your employer or self-insured is $13,000 per year. Imagine how awful it must feel to pay for side effects!
Once again, the endocrinologist used the"F"
word: FRACTURE.

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@sue225 There really is no good option. I know some people swear by the natural approach but I don't honestly think it's as effective as these drugs. It's "$#%@&*^" if you, "$#%@&*^" if you don't" type of thing.
JK

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@sue225

@contentandwell I find myself in a similar situation. My endocrinologist in a very recent appointment gave me the option of switching to Reclast (it's called Aclasta in Canada where I am) instead of having a fourth Prolia injection. (Although she is of the opinion that my worsening gastrointestinal problems are not Prolia related. However, there is truly no way of knowing unless you stop. And, I think I'm right!). I have read up on Reclast. For me, it has two worrisome common side effects. I have an arrythmia and a severe dry eye problem and probably have minor corneal inflammations frequently. Reclast can cause arrythmias and a some patients get an inflammation of the iris and/or conjunctivitis. Then, there is the issue that the drug stays in your system for 12 months.
On a positive note, the endocrinologist prescribed this treatment for her frail 88 year old mother-in-law who has experienced mild achiness which is temporary and for that the doctor told her to take Tylenol. Also, apparently if you are thin (like her mother-in-law and like me) you can as the endocrinologist put it " coast longer than one year" on Reclast.
Stick with the devil I know?
Forteo in Canada unless you have a private drug plan through your employer or self-insured is $13,000 per year. Imagine how awful it must feel to pay for side effects!
Once again, the endocrinologist used the"F"
word: FRACTURE.

Jump to this post

Doctors are universal in denying Prolia side effects. My gastroenterologist told me that he has a number of patients who are on Prolia and experiencing gastrointestinal issues

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@contentandwell

@sue225 There really is no good option. I know some people swear by the natural approach but I don't honestly think it's as effective as these drugs. It's "$#%@&*^" if you, "$#%@&*^" if you don't" type of thing.
JK

Jump to this post

@contentandwell the natural approach works if you are under 30 and still building bone (there should be a huge emphasis on prevention during those bone building years). Once you are in the osteoporosis stage and of a certain age it's not going to work partly because of that imbalance in the bone remodeling process that comes with age. (Although you do need adequate daily amounts of calcium and vit d and my doctor said make sure you get enough protein). Also, at least the prescription meds undergo rigorous testing.
My doctor is always emphasizing resistance exercise and balance exercises. I fail in that regard.
Two words: don't fall.

For all of us who are the drug-sensitive types, treatment is challenging.

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@mabel343

Doctors are universal in denying Prolia side effects. My gastroenterologist told me that he has a number of patients who are on Prolia and experiencing gastrointestinal issues

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@mabel343 I agree with you. It is helpful to read a comment like yours.

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@mabel343

Doctors are universal in denying Prolia side effects. My gastroenterologist told me that he has a number of patients who are on Prolia and experiencing gastrointestinal issues

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@mabel343 were you or are you taking Prolia?

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I’m 65, was diagnosed with osteoporosis 5 yrs ago and sent to a bone specialist. He said I’m doing everything right, eating right, taking the right supplements, have no family history of fractures, so to keep doing what I’m doing. Just to add weight bearing exercises. I’m currently doing OsteoStrong and very hopeful my next scan is going to show great improvement! Have 2 friends that have not only gotten out of osteoporosis, but even osteopenia with OsteoStrong! Both in late 60’s! YES, you can do it without drugs!!!

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I have a family member who was diagnosed with cancer while on Forteo. Coincidence? Neither she nor I am sure. Also have another friend who fell and broke 12 ribs.... after being on Forteo and Prolia. Never had a broken bone before drugs.... and she’s in mid 80’s.

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@debbiem Forteo does have that black box warning about bone cancer. In the studies, the lab rats did get bone cancer. I think the reason you can only be on it for 18 months is because the long term side effects are unknown.
The broken bone thing is also frightening. Wonder if some of these drugs will still be on the market in the future? It's a bit like being part of a big experiment.

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It’s the long term issues I’m afraid of! Not worth the risks to me.
Osteoporosis is almost unheard of in Israel, Turkey, and Japan. There is a LOT of boron in their water and soil/food. Countries like Jamaica and USA have very little boron in soil/water and have large problems with osteoporosis! I have added 30mg of boron to my supplements everyday. Through my research, I’ve read that Japanese and Turkish people get over 70mg/day just through their food/water.

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