Alternative treatment instead of Prolia injections

Posted by malliecallie @malliecallie, Feb 27 9:50am

Recently diagnosed with Osteoporosis, doctor prescribed Prolia injections. Because of possible serious side effects, I do not want to take it. I am 79, active, working as office administrator, walking an hour (fast walking) 7 days a week. I want to remain active and feeling good.

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Reclast is generally recommended after Prolia. Some people have adverse reactions to Reclast. Recommendation from a Stanford bone expert.

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"I have prescribed a lot of Reclast (zoledronic acid), which to my knowledge is always administered in an infusion center, and not in a physician's office.My strong recommendation based on my knowledge of bisphosphonates (given that I helped to develop three of them, and treated 13,000 patients in phase 3 trials with them) is to have the infusion center dilute the 5 mg of zoledronic that comes in 100 mL of D5W into 500 mL of NS, and infuse the endodoc recnow 600 mL over 60 minutes. Making the drug more dilute and administering it more slowly significantly improves the renal safety for N-containing bisphosphonates.I also strongly recommend that the infusion nurses give the patient 650 mg of acetaminophen (Tylenol) at the time of the infusion, and that the patient take that same dose with dinner and at bedtime the day of the infusion, with all 3 meals and at bedtime the day after the infusion, and a final (7th) dose of acetaminophen with breakfast the 2nd morning after the infusion. These 8 doses total of Tylenol reduce the chance of a symptomatic APR (Acute Phase Reaction) from 22% to < 1%.Best, endodoc"
_______________________
Windyshores convinced her physician to prescribe a half dose. You can access all of her advice on by clicking on her name. I suspect you'll hear from her directly.

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@gently

Reclast is generally recommended after Prolia. Some people have adverse reactions to Reclast. Recommendation from a Stanford bone expert.

____________
"I have prescribed a lot of Reclast (zoledronic acid), which to my knowledge is always administered in an infusion center, and not in a physician's office.My strong recommendation based on my knowledge of bisphosphonates (given that I helped to develop three of them, and treated 13,000 patients in phase 3 trials with them) is to have the infusion center dilute the 5 mg of zoledronic that comes in 100 mL of D5W into 500 mL of NS, and infuse the endodoc recnow 600 mL over 60 minutes. Making the drug more dilute and administering it more slowly significantly improves the renal safety for N-containing bisphosphonates.I also strongly recommend that the infusion nurses give the patient 650 mg of acetaminophen (Tylenol) at the time of the infusion, and that the patient take that same dose with dinner and at bedtime the day of the infusion, with all 3 meals and at bedtime the day after the infusion, and a final (7th) dose of acetaminophen with breakfast the 2nd morning after the infusion. These 8 doses total of Tylenol reduce the chance of a symptomatic APR (Acute Phase Reaction) from 22% to < 1%.Best, endodoc"
_______________________
Windyshores convinced her physician to prescribe a half dose. You can access all of her advice on by clicking on her name. I suspect you'll hear from her directly.

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I did not convince my doc to reduce the dose. He has been nervous about prescribing Reclast to the extent that he did not prescribe it during my cancer treatment, which is how my bones got so bad.

The concern about afib (I have paroxysmal afib) and kidneys has lessened but he still wants me to do a test dose of 20% (not half). That is 1 mg out of 5mg full dose.

I have done a partial dose of Tymlos and for my second appointment for Evenity, declined the second shot and only did one, which is a half dose. My doc did not prescribe that. I just declined on the spot and messaged him about it.

I have read that 2.5mg (1/2 dose) of Reclast is effective. I plan on asking my doc about that. His plan is for me to do the test dose of 1mg, then report after a month whether I tolerated it and what my next dose should be. I want to emphasize that this arrangement is probably unusual and is related to my other health issues. And it is coming from the doc, not me (for a change!)

REPLY
@windyshores

I did not convince my doc to reduce the dose. He has been nervous about prescribing Reclast to the extent that he did not prescribe it during my cancer treatment, which is how my bones got so bad.

The concern about afib (I have paroxysmal afib) and kidneys has lessened but he still wants me to do a test dose of 20% (not half). That is 1 mg out of 5mg full dose.

I have done a partial dose of Tymlos and for my second appointment for Evenity, declined the second shot and only did one, which is a half dose. My doc did not prescribe that. I just declined on the spot and messaged him about it.

I have read that 2.5mg (1/2 dose) of Reclast is effective. I plan on asking my doc about that. His plan is for me to do the test dose of 1mg, then report after a month whether I tolerated it and what my next dose should be. I want to emphasize that this arrangement is probably unusual and is related to my other health issues. And it is coming from the doc, not me (for a change!)

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So, your doctor is even better than I thought.

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My mother is 90 and her PCP insists she needs to go on an osteoporosis drug, specifically Prolia, as her numbers are off the chart. She is terrified by what she has read about the side effects (as am I) and we’re trying to find her an alternative. She was on Fosamax for years followed by Forteo, but nothing since. I do agree she should be on something, though her Dr. says she can’t go back on another Bisphosphonate - is this true? I know she can’t go on Tymlos, Evenity is a possibility but only for one year. What about Raloxifene? I’ve never seen a conversation about that one. Any thoughts would be most helpful…

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@bec39

My mother is 90 and her PCP insists she needs to go on an osteoporosis drug, specifically Prolia, as her numbers are off the chart. She is terrified by what she has read about the side effects (as am I) and we’re trying to find her an alternative. She was on Fosamax for years followed by Forteo, but nothing since. I do agree she should be on something, though her Dr. says she can’t go back on another Bisphosphonate - is this true? I know she can’t go on Tymlos, Evenity is a possibility but only for one year. What about Raloxifene? I’ve never seen a conversation about that one. Any thoughts would be most helpful…

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Why can't she go on Tymlos?

I have older friends on Prolia and doing okay. At 90 she might not have to deal with the issues of getting off Prolia.

Of course Evenity might get her out of trouble fast.

No matter what she does, she will have to do a bisphosphonate like Reclast or Fosamax to keep her gains. Unless she just stays on Prolia for her lifetime.

REPLY
@windyshores

Why can't she go on Tymlos?

I have older friends on Prolia and doing okay. At 90 she might not have to deal with the issues of getting off Prolia.

Of course Evenity might get her out of trouble fast.

No matter what she does, she will have to do a bisphosphonate like Reclast or Fosamax to keep her gains. Unless she just stays on Prolia for her lifetime.

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@windyshores - Thank you for your input and support…
I believe Tymlos is the same as Forteo and you can only be on one of them for two years, and she was on Forteo already. I want to believe that she will be fine on Prolia as she’s never been sensitive to any drug before but she’s resisting. And, yes, the thought is that she would never come off it as you mentioned. But maybe Evenity is the first thing she should try, that way if she has issues she can stop. I believe you’re on Evenity now, right? Did you start with just one shot or both? I thought maybe she could start with just the one but then I read that the side effects are the same even with the lower dose.
And regarding Bisphosphonates, they told her that she was on one (Fosamax) for too long and could not go back on another - I have to confirm this because it doesn’t sound right?

REPLY
@bec39

@windyshores - Thank you for your input and support…
I believe Tymlos is the same as Forteo and you can only be on one of them for two years, and she was on Forteo already. I want to believe that she will be fine on Prolia as she’s never been sensitive to any drug before but she’s resisting. And, yes, the thought is that she would never come off it as you mentioned. But maybe Evenity is the first thing she should try, that way if she has issues she can stop. I believe you’re on Evenity now, right? Did you start with just one shot or both? I thought maybe she could start with just the one but then I read that the side effects are the same even with the lower dose.
And regarding Bisphosphonates, they told her that she was on one (Fosamax) for too long and could not go back on another - I have to confirm this because it doesn’t sound right?

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She could do Evenity and then Prolia. I don't think anyone other than me has done one shot of Evenity (!)and a doc certainly won't prescribe that! She will no doubt be fine with the full dose: most people are.

That way she avoids further bisphosphonates (unless she stops Prolia)

REPLY
@bec39

My mother is 90 and her PCP insists she needs to go on an osteoporosis drug, specifically Prolia, as her numbers are off the chart. She is terrified by what she has read about the side effects (as am I) and we’re trying to find her an alternative. She was on Fosamax for years followed by Forteo, but nothing since. I do agree she should be on something, though her Dr. says she can’t go back on another Bisphosphonate - is this true? I know she can’t go on Tymlos, Evenity is a possibility but only for one year. What about Raloxifene? I’ve never seen a conversation about that one. Any thoughts would be most helpful…

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I am taking raloxifene (generic Evista) but cannot comment on its effectiveness as I have not had a scan since starting it. Blood clots are a possible side effect, but my endocrinologist was not overly concerned as I do not have a history.

I had been on Prolia (5 injections) but stopped because I felt it was a factor in my extreme hair loss. I am not a candidate for Fosomax due to GI issues. I also had breast cancer and raloxifene may help ward off this disease (?).

Best wishes,
Cindy

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@cmdw2600

I am taking raloxifene (generic Evista) but cannot comment on its effectiveness as I have not had a scan since starting it. Blood clots are a possible side effect, but my endocrinologist was not overly concerned as I do not have a history.

I had been on Prolia (5 injections) but stopped because I felt it was a factor in my extreme hair loss. I am not a candidate for Fosomax due to GI issues. I also had breast cancer and raloxifene may help ward off this disease (?).

Best wishes,
Cindy

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Thank you, Cindy, this really helps. I started my journey on Raloxifene and had no side effects but haven’t heard it mentioned on this forum. I don’t think it’s a bone builder but might be a good option for my mom to follow a year on Evenity.
I wish you continued good health and free of cancer…

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@windyshores

She could do Evenity and then Prolia. I don't think anyone other than me has done one shot of Evenity (!)and a doc certainly won't prescribe that! She will no doubt be fine with the full dose: most people are.

That way she avoids further bisphosphonates (unless she stops Prolia)

Jump to this post

Thanks, I agree. I think starting with a full dose of Evenity is the way to go…she can always stop if/when she wants and move on to something else.

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