High anxiety regarding Reclast or Prolia decison for OP meds

Posted by 255anny @255anny, Aug 18 5:01pm

I am overwhelmed with making this decision. Currently on Evenity, 2 more injections left. Severe Osteporosis. Spine -4.7. I left my OP Dr's office last week with an order for Prolia starting Oct/Nov. And blood work orders. We did discuss Prolia vs Reclast but I didn't ask enough questions I guess, despite having a 1 hour appt with her. I did know and told her I feared Prolia. She relayed how much easier it was than Reclast. And the Reclast stays in your system much longer. She wrote the RX for Prolia for 1 year, then relay to Evenity again. That does not sound right to me. I can't find any studies supporting that drug sequencing. This Dr is new to me but in the practice of the most respected Endo offices in my state. She only see OP patients. I am staying up til 3am every night reading and researching. There is no right answer.

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@255anny

I have spent many hours researching and trying to educate myself regarding Prolia, Evenity and Reclast. Those hours spent are not entirely helpful. In fact I think I'm more confused.
My Dr's nurse finally replied to my online portal requests and assures me she will get back to me soon. I was short and sweet and stated I was not comfortable taking the Prolia > Evenity. So will shall see.
Anyway, now that I've spent 4 days researching Reclast and side effects - I'm shaking in response. Of course, we don't see many of the lesser or no side effects mentioned online. But the serious side effects that are talked about, really scare me. I'd like to get my thoughts straight before I speak with my Dr, but right now I can't do that.
One year of Prolia > Evenity. The Evenity may not blunt the rebound of Prolia. Reclast > ??? The Reclast scares me.

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@255anny I get the way research can send you in circles. I did the same thing with breast cancer but there were more answers there. Honestly, I often feel that research is not going to get us answers to a lot of our questions, and that our doctors can't answer them either- or they all have different opinions.

Someone posted a study that did show Evenity blunting Prolia rebound with very slight gain on the Evenity due to blunting after Prolia.

You could ask your doctor about doing 1-2 Prolias and then Reclast. McCormick has said rebound is gentler with just 1-2 shots, as I remember

I have friends who have done just fine on Reclast. I am not a good example because I did a low dose due to kidneys and afib but it has gone smoothly after brief fever.

I have found there comes a time to put the book down or close the computer and just pick a path. None of them are perfect and all of them will help. If you cannot tolerate a med, you can try something else!

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@windyshores

@255anny I get the way research can send you in circles. I did the same thing with breast cancer but there were more answers there. Honestly, I often feel that research is not going to get us answers to a lot of our questions, and that our doctors can't answer them either- or they all have different opinions.

Someone posted a study that did show Evenity blunting Prolia rebound with very slight gain on the Evenity due to blunting after Prolia.

You could ask your doctor about doing 1-2 Prolias and then Reclast. McCormick has said rebound is gentler with just 1-2 shots, as I remember

I have friends who have done just fine on Reclast. I am not a good example because I did a low dose due to kidneys and afib but it has gone smoothly after brief fever.

I have found there comes a time to put the book down or close the computer and just pick a path. None of them are perfect and all of them will help. If you cannot tolerate a med, you can try something else!

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This last paragraph is where I am with Prolia. It’s been suggested to me for years and I was terrified of side effects. I went with Evenity just over a year ago, also terrified of side effects but I chose to risk those over the other. I did fine with Evenity, sore arms for a day and that was it. I’m willing to at least try Prolia since there’s some evidence it could increase my bone density even a little further than the Evenity did, rather than just maintaining it. If it doesn’t go well, I’ll try other options (Reclast, or back to Fosamax).

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@neesie0159

This last paragraph is where I am with Prolia. It’s been suggested to me for years and I was terrified of side effects. I went with Evenity just over a year ago, also terrified of side effects but I chose to risk those over the other. I did fine with Evenity, sore arms for a day and that was it. I’m willing to at least try Prolia since there’s some evidence it could increase my bone density even a little further than the Evenity did, rather than just maintaining it. If it doesn’t go well, I’ll try other options (Reclast, or back to Fosamax).

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Thank you for responding and sharing your experiences. I've read some many published studies on Prolia and Reclast, I'm just exhausted. Like @windyshores stated, there comes a time to just put down the books and close the computer. It is truly draining. I've been focusing my reading on the adverse reactions of Prolia and Reclast. In my opinion, the women who will be taking these drugs are not being told what is happening in the real world. It seems the studies often reflect the same reactions occurring in both the drug group and the placebo group, at about the same percentage. How can that be! Mind you, not all the studies I've read do I see this, but I've seen enough to raise a red flag. My 11th injection of Evenity is tomorrow. I have to make this next drug decision asap.
I had barely any reaction to Evenity - piece of cake. No reaction to Forteo either. But a full dose of Reclast in my tiny little body might be another story!

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@255anny

Thank you for responding and sharing your experiences. I've read some many published studies on Prolia and Reclast, I'm just exhausted. Like @windyshores stated, there comes a time to just put down the books and close the computer. It is truly draining. I've been focusing my reading on the adverse reactions of Prolia and Reclast. In my opinion, the women who will be taking these drugs are not being told what is happening in the real world. It seems the studies often reflect the same reactions occurring in both the drug group and the placebo group, at about the same percentage. How can that be! Mind you, not all the studies I've read do I see this, but I've seen enough to raise a red flag. My 11th injection of Evenity is tomorrow. I have to make this next drug decision asap.
I had barely any reaction to Evenity - piece of cake. No reaction to Forteo either. But a full dose of Reclast in my tiny little body might be another story!

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@255anny , the subjects in a clinical trial were carefully selected according to predetermined criteria for study purposes in reaching a meaningful conclusion. That cohort will be different from a real life population - some of whom have one or more disease states that might amplify unwanted side effects of the drug, or even present with an adverse effect that was unknown during a trial. It might be better to focus on the list of adverse effects that the manufacturer provided, which most likely to occur if you are more or less resembling the study cohort, and using personal counts or experiences from fellow patients as an added reference.

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@mayblin

@255anny , the subjects in a clinical trial were carefully selected according to predetermined criteria for study purposes in reaching a meaningful conclusion. That cohort will be different from a real life population - some of whom have one or more disease states that might amplify unwanted side effects of the drug, or even present with an adverse effect that was unknown during a trial. It might be better to focus on the list of adverse effects that the manufacturer provided, which most likely to occur if you are more or less resembling the study cohort, and using personal counts or experiences from fellow patients as an added reference.

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But I am in the group precluded from trials so real world experience is far more important and relevant to me than that of cherry-picked candidates.

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@255anny

I have spent many hours researching and trying to educate myself regarding Prolia, Evenity and Reclast. Those hours spent are not entirely helpful. In fact I think I'm more confused.
My Dr's nurse finally replied to my online portal requests and assures me she will get back to me soon. I was short and sweet and stated I was not comfortable taking the Prolia > Evenity. So will shall see.
Anyway, now that I've spent 4 days researching Reclast and side effects - I'm shaking in response. Of course, we don't see many of the lesser or no side effects mentioned online. But the serious side effects that are talked about, really scare me. I'd like to get my thoughts straight before I speak with my Dr, but right now I can't do that.
One year of Prolia > Evenity. The Evenity may not blunt the rebound of Prolia. Reclast > ??? The Reclast scares me.

Jump to this post

Hello- I did a good amount of research on this one as well. I choose Reclast. Only my one hip (-2.5) had crossed into Osteo. I have had 2 of the infusions. Each one was with hydration as well. My bloodwork prior indicated being a good candidate and my blood work prior to the second indicated that the medication is working. I also have had an oral exam prior to each insufsion. In terms of side effects, after the first infusion, the following day I was a bit "flu" like following. I just rested and nothing more developed. I did not have that reaction with the 2nd infusion. The only other "side effect" was in both infusions, my resting heart rate (which is generally low due to years of cardio) was lower. I was not tired or experience any other symptoms. I don't know you medical history of course but my experience thus far has been postive as was my friend's who directed me to the medical group that provided options and treated me. Ask your DR for all the details on each choice and decide from there. Once I read them all I chose Reclast. Best of luck

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@anmlmom1

Hello- I did a good amount of research on this one as well. I choose Reclast. Only my one hip (-2.5) had crossed into Osteo. I have had 2 of the infusions. Each one was with hydration as well. My bloodwork prior indicated being a good candidate and my blood work prior to the second indicated that the medication is working. I also have had an oral exam prior to each insufsion. In terms of side effects, after the first infusion, the following day I was a bit "flu" like following. I just rested and nothing more developed. I did not have that reaction with the 2nd infusion. The only other "side effect" was in both infusions, my resting heart rate (which is generally low due to years of cardio) was lower. I was not tired or experience any other symptoms. I don't know you medical history of course but my experience thus far has been postive as was my friend's who directed me to the medical group that provided options and treated me. Ask your DR for all the details on each choice and decide from there. Once I read them all I chose Reclast. Best of luck

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Thank you for telling me how you reacted. Can you tell me how you "prepped" for the infusion - hydrating, etc... the day before, day of and after?

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@255anny

Thank you for responding and sharing your experiences. I've read some many published studies on Prolia and Reclast, I'm just exhausted. Like @windyshores stated, there comes a time to just put down the books and close the computer. It is truly draining. I've been focusing my reading on the adverse reactions of Prolia and Reclast. In my opinion, the women who will be taking these drugs are not being told what is happening in the real world. It seems the studies often reflect the same reactions occurring in both the drug group and the placebo group, at about the same percentage. How can that be! Mind you, not all the studies I've read do I see this, but I've seen enough to raise a red flag. My 11th injection of Evenity is tomorrow. I have to make this next drug decision asap.
I had barely any reaction to Evenity - piece of cake. No reaction to Forteo either. But a full dose of Reclast in my tiny little body might be another story!

Jump to this post

@255anny if you did well with Forteo and Evenity, that's great, and maybe you will also do well with Reclast! Let us know!

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I am 73 with osteoporosis and having to make this very difficult decision about medications also. I’m extremely worried about all the side effects with Prolia. I have decided not to do that one but wondering what is the best alternative with the least side effects. I do not handle medications well and try to stay away from them as much as possible. After years of being healthy I have been hit with one health issue after another and since my husband passed away and I have no children I’m very worried about making this decision by myself. Thanks so much for any advice you can give me!

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I am rejecting Prolia and exploring marine calcium products like Ocean Essence Total Bone Support supplements with my Functional Medicine doctor (not my rheumatologist). When I told my rheumatologist, she suggested I make sure I am not taking too much vitamin D because my D scores are higher than normal.

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