High anxiety regarding Reclast or Prolia decison for OP meds

Posted by 255anny @255anny, Aug 18, 2024

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

Thanks for the info. So it's advised to take the Zyrtec after the infusion and next time 5 days before if any reactions popped up? I read somewhere to take the Zyrtec before the infusion to help. I actually was thinking about doing that the day before and maybe for 1 or 2 days after. Along with Tylenol. I don't want to make myself weaker or ill with these OTC meds but I want to do anything I can to avoid horrible reactions.

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Helped me with Evenity as well to quell inflammation and also stop hives. I was able to complete the series with great gains ranging anywhere from 4.6% to 10.4%. And, my spine is normal! Everything else is in mid-osteopenia range and endo says not unusual for 74 years old. We continue by going back to Prolia a couple of years and then Reclast again. Good success so far.

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I can relate to what you are going through. I have seen 2 different endo’s, both are highly specialized in metabolic bone disease and that is their only focus. One recommends that I relay off of Prolia after 5 1/2 years to Fosamax for 6 mos and then to Evenity. The other said that I need to relay off of Prolia onto a bisphosphonate and he highly recommends reclast because I’ve already had 2 spontaneous vertebrae fractures in past 2 mos. I fear that Reclast is too strong after being on Prolia for so long and worry about ONJ or atypical femur fracture.
So I’m quite stressed trying to make the right decision.
please keep me posted on what you decide and I will do the same.

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@255anny

Thanks for the info. So it's advised to take the Zyrtec after the infusion and next time 5 days before if any reactions popped up? I read somewhere to take the Zyrtec before the infusion to help. I actually was thinking about doing that the day before and maybe for 1 or 2 days after. Along with Tylenol. I don't want to make myself weaker or ill with these OTC meds but I want to do anything I can to avoid horrible reactions.

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I have severe allergies to fragrance (anaphylaxis). I just want you to know that my allergist told me that I can take 4 Zyrtec a day if I need to. She said it is a very safe medication. You may want to look into that.

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@jpareti1

Thanks. Yes my specialists have given me their opinions. But I like doing my own research. Esp since a specialist put me in this mess in the first place because he didn’t bother to mention that I can’t just quit Prolia, and that I shouldn’t stay on it much more than 2.5 yrs. And he was also a renowned end in MBD at HSS in NYC.
The endo who now wants to put me on Evenity is a researcher who does studies with Amgen , the manufacturer of Prolia and Evenity. I asked her if there are studies of people who have relayed from Prolia to Evenity and she said no, not yet. So I say no thank you!
Thanks for the links. I like to hear from people who have quit Prolia.
I’ll check them out.

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I did 2 years of Reclast. THEN I did 2 years of Prolia. I just finished a year of Evenity after Prolia. Through this crazy backwards drug extravaganza, I gained bone and had no fractures. I was a -4.5 in my spine. I am now a -3.3 in my spine. My hips have gained from a -2.6 to -1.6. Though doomed to do osteoporosis drugs the rest of my life, in the end, I may still be a little old warped lady in a wheelchair. But for now, no broken bones!

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@gently
Just saw my rheumatologist since I could not tolerate Tymlos (hypercalcemia) and he wants to do Prolia (he said for LIFE if I prefer) or Reclast. When I asked him about a slower infusion of Reclast (suggested by @windyshores) he said his nursing staff does a 20 minute infusion and with no hydration and stated that hydration may create other problems?? I’m so confused and overwhelmed at this point. I tend to go with the opinions and information on this site and other studies I’ve read over my own doctor. It’s so sad there is not more consensus in the medical community. Bottom line, I asked for some time to think about all of this, but know I have to do something.

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lhankins,
have you considered Forteo. Tymlos is four times as much medication as Forteo and Forteo has a lesser impact on calcium levels.
A few small studies indicate that Prolia is usually safe for 5 to 7 years. You may have a good experience with Prolia and may be able to take it for life without fracturing. The statistical risk of atypical femur fracture and osteonecrosis are quite low. Flu-like symptoms after infusion are more common. The often unreported, devastating effects are usually in the elderly.
Damage for the relatively few is so extreme that I hold a negative opinion of the medication.
It may be (sounds as if) the rheumatologist is uncomfortable requesting a slower infusion from the nursing staff.
Dilution of the medication for a slower infusion protects your kidney's in addition to making your response to the medication more comfortable. "Other problems," I mark with a question mark the way you have. If you increase the hydration and don't increase the time of infusion that would cause other problems.
I'd prefer that you'd have a lower dose of Reclast initially with a longer infusion.
You might ask the physician if they can refer you to a different infusion center. You might call the infusion center and ask if they could accomodate a longer infusion and then recontact the physician.
We need better choices. I hope your choice brings you the best luck.

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@lhankins

@gently
Just saw my rheumatologist since I could not tolerate Tymlos (hypercalcemia) and he wants to do Prolia (he said for LIFE if I prefer) or Reclast. When I asked him about a slower infusion of Reclast (suggested by @windyshores) he said his nursing staff does a 20 minute infusion and with no hydration and stated that hydration may create other problems?? I’m so confused and overwhelmed at this point. I tend to go with the opinions and information on this site and other studies I’ve read over my own doctor. It’s so sad there is not more consensus in the medical community. Bottom line, I asked for some time to think about all of this, but know I have to do something.

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I had a total of 5 years of Reclast. 3 years 15 years ago and 2 years starting 5 years ago. I did not have hydration but I drank a lot of water prior to and after my infusions. I did not have any side effects.

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@gently

lhankins,
have you considered Forteo. Tymlos is four times as much medication as Forteo and Forteo has a lesser impact on calcium levels.
A few small studies indicate that Prolia is usually safe for 5 to 7 years. You may have a good experience with Prolia and may be able to take it for life without fracturing. The statistical risk of atypical femur fracture and osteonecrosis are quite low. Flu-like symptoms after infusion are more common. The often unreported, devastating effects are usually in the elderly.
Damage for the relatively few is so extreme that I hold a negative opinion of the medication.
It may be (sounds as if) the rheumatologist is uncomfortable requesting a slower infusion from the nursing staff.
Dilution of the medication for a slower infusion protects your kidney's in addition to making your response to the medication more comfortable. "Other problems," I mark with a question mark the way you have. If you increase the hydration and don't increase the time of infusion that would cause other problems.
I'd prefer that you'd have a lower dose of Reclast initially with a longer infusion.
You might ask the physician if they can refer you to a different infusion center. You might call the infusion center and ask if they could accomodate a longer infusion and then recontact the physician.
We need better choices. I hope your choice brings you the best luck.

Jump to this post

@gently
My doctor won’t prescribe Forteo for me because he says it is best for osteoporosis in the hips where mine is mainly in my spine. He stated that Tymlos was more appropriate for spine. The only option he has offered me is Prolia or Reclast and he thinks Prolia until end of life would be best for me. He will also administer the infusions only as suggested by the manufacturer; in fact, he would not let me continue on Tymlos on a lower dose because he stated there is no data to support the lower dose. However; I have read on this site patients who have had great results with the lower dosage. I have an appointment scheduled with a highly recommended endocrinologist; unfortunately it is not until January 2026. I’m getting the definite impression the endocrinologists are the way to go. My rheumatologist does not use the CTX or P1NP tools to evaluate osteoporosis once on medications either. He does not think that they are necessary but did admit endocrinologists commonly use these tools. Right now I am hoping I can hang on until January but worried I’m going to lose more ground. I have a brand new Tymlos pen in my fridge ($2800) and told not to use it. I wish I could give it to someone here that needs it.

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There is a podcast by Dr Ben Leder from Harvard that talks about the sequencing of medication and how it is best to start with anabolic medications.

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lhankins, your doctor may be correct but everything I've read tells me that Forteo is not as effective in the hips. Both Forteo and Tymlos work fastest in the spine where we have the most trabecular bone.
Patients report loss of bone density in the hip after Forteo. After two years I've no change in the hip but am at -2.6 from -3.3 in the spine.
I'd use that $2800 pen, if I had it.
Windyshores reported good gains with reduced Tymlos. I'm looking for that post.

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