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.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@255anny

Update:
I had a very productive appt with my Endo DR. I was expecting a short and to the point appt but wow! She spent 1 hour with me. She loved that I brought in my list of questions and remarked that they were great questions and showed that I had been researching deep. She also mentioned as a Dr, it's very helpful to get those kind of questions and it's questions like mine that are shared at the bone conferences. At that point I realized we were going to be a good fit. We discussed my medication options following Evenity and it was agreed that I should transition to Reclast for 1 infusion, then transition to Evenity again. She wasn't put off that I did not want to go to Prolia right now. Very understanding. Some of my questions involved bone markers and testing. We talked about that for quite some time. We will be using CTX levels to help determine when to start the Reclast. She also will order an additional saline flush after the Reclast infusion. We also discussed the importance of being very well hydrated before and after the infusion. And to take Tylenol before and after. I had a concern about the Reclast attaching or attacking my hip replacement and causing a lot of pain - who knows where I read this. I am so
relieved to have this decision done.

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Hi @255anny thank you very much for the info. I'm very happy for you that you get your questions answered and that you have a great endo being there providing a great care. If you could, please keep us posted regarding your ongoing treatment. I'm curious how you and your endo will be using ctx to guide the timing for the start of reclast, as well as the start of second round of evenity.

Wish you the very best!

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@mayblin

Hi @255anny thank you very much for the info. I'm very happy for you that you get your questions answered and that you have a great endo being there providing a great care. If you could, please keep us posted regarding your ongoing treatment. I'm curious how you and your endo will be using ctx to guide the timing for the start of reclast, as well as the start of second round of evenity.

Wish you the very best!

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I slept so much better after this was resolved, haha. But I know the challenge of OP will never be over. My hopes are I don't have to go thru this kind of angst again. But who knows what is ahead.
Regarding the CTX - she will use it as a guide and even then, that is not set in stone because we all know the variables surrounding bone markers. I will be getting a CTX baseline in a few weeks. My Dr. will determine if we are good to go with the Reclast in early November or wait. If the CTX numbers are low (below 200??) we will do another CTX in mid-October to see if the numbers have increased. I am very naive in my understanding of Bone marker numbers. That being said, I hope I understood the Dr correctly. I scribbled it all down as fast as I could, so I might have misunderstood a component of her plan. I'm still leary of the Reclast infusion and how I might react to it. But it's a risk I have to take.
On another note, I saw my Orthopedic Dr today. Viewing my spinal x-rays he could not believe my DEXA scores were -4.7. He told me even his PA was surprised too. There was no evidence of OP in the x-ray. But it's my understanding that you cannot see OP on a spinal x-ray. He's a great Dr, I know he sees a lot. I did Google it and apparently at some point there can be indication of OP on an x-ray. Who knows 🙂

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@255anny

I slept so much better after this was resolved, haha. But I know the challenge of OP will never be over. My hopes are I don't have to go thru this kind of angst again. But who knows what is ahead.
Regarding the CTX - she will use it as a guide and even then, that is not set in stone because we all know the variables surrounding bone markers. I will be getting a CTX baseline in a few weeks. My Dr. will determine if we are good to go with the Reclast in early November or wait. If the CTX numbers are low (below 200??) we will do another CTX in mid-October to see if the numbers have increased. I am very naive in my understanding of Bone marker numbers. That being said, I hope I understood the Dr correctly. I scribbled it all down as fast as I could, so I might have misunderstood a component of her plan. I'm still leary of the Reclast infusion and how I might react to it. But it's a risk I have to take.
On another note, I saw my Orthopedic Dr today. Viewing my spinal x-rays he could not believe my DEXA scores were -4.7. He told me even his PA was surprised too. There was no evidence of OP in the x-ray. But it's my understanding that you cannot see OP on a spinal x-ray. He's a great Dr, I know he sees a lot. I did Google it and apparently at some point there can be indication of OP on an x-ray. Who knows 🙂

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@255anny Hello. I would like to share this video that another lady in the group shared with me. Very interesting. I think maybe many of us are overthinking the osteoporosis diagnosis. Good luck with your care.

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@lkhender

@255anny Hello. I would like to share this video that another lady in the group shared with me. Very interesting. I think maybe many of us are overthinking the osteoporosis diagnosis. Good luck with your care.

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@lkhender Osborne is not an MD. His information seems dated. I would love to ask him what he thinks fractures are like. Many of us have no choice but to take meds and bisphosphonates are the only meds used to "lock in gains" even if not uses as primay drug.

From my perspective, criticism of meds amounts to health privilege. I don't have the choice to view bisphosphonates they way he describes, and I rely no DEXA's for results, though I interpret them myself,

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@papillon89

@windyshores @255anny

I did do the Reclast infusion 10 days back. I had taken plenty of water day of and days after. I did take 1000mg Tylenol prior to infusion.

I did not seem to have any side effects. I had a mild fever (under 99 F), a day later for a couple of days. I took some Tylenols. I am not entirely sure I can attribute that to Reclast as I was having similar mild fevers 2 days prior to infusion. I am not sure what to make of it.

Thank you for your advice and support.

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Good to hear that it went well. I'm having my first Reclast infusion tomorrow morning. Drinking lots of water and hoping for the best! Relieved to be finally getting back on meds.

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@lizzie12

Good to hear that it went well. I'm having my first Reclast infusion tomorrow morning. Drinking lots of water and hoping for the best! Relieved to be finally getting back on meds.

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Good luck!
I was drinking good amounts of water till 3-4 days after the infusion.

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@lkhender

@255anny Hello. I would like to share this video that another lady in the group shared with me. Very interesting. I think maybe many of us are overthinking the osteoporosis diagnosis. Good luck with your care.

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Thanks, Ikhender, for sending the video of Dr Osborne. Very informative.

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@255anny

I slept so much better after this was resolved, haha. But I know the challenge of OP will never be over. My hopes are I don't have to go thru this kind of angst again. But who knows what is ahead.
Regarding the CTX - she will use it as a guide and even then, that is not set in stone because we all know the variables surrounding bone markers. I will be getting a CTX baseline in a few weeks. My Dr. will determine if we are good to go with the Reclast in early November or wait. If the CTX numbers are low (below 200??) we will do another CTX in mid-October to see if the numbers have increased. I am very naive in my understanding of Bone marker numbers. That being said, I hope I understood the Dr correctly. I scribbled it all down as fast as I could, so I might have misunderstood a component of her plan. I'm still leary of the Reclast infusion and how I might react to it. But it's a risk I have to take.
On another note, I saw my Orthopedic Dr today. Viewing my spinal x-rays he could not believe my DEXA scores were -4.7. He told me even his PA was surprised too. There was no evidence of OP in the x-ray. But it's my understanding that you cannot see OP on a spinal x-ray. He's a great Dr, I know he sees a lot. I did Google it and apparently at some point there can be indication of OP on an x-ray. Who knows 🙂

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@255anny I haven't researched this at all but I can say the the radiologists looking at xrays I have had commented that there appeared to be bone thinning. Don't remember the exact wording. So, I'm guessing that they can observe this but have no way of quantifying it as a DXA scan does. They cannot put a number on it but they can see it's happening.

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@awfultruth

@255anny I haven't researched this at all but I can say the the radiologists looking at xrays I have had commented that there appeared to be bone thinning. Don't remember the exact wording. So, I'm guessing that they can observe this but have no way of quantifying it as a DXA scan does. They cannot put a number on it but they can see it's happening.

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I have had one radiologist call attention to my osteoporosis. That was on either a neck or chest x-ray; I believe it was the neck one.

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