Has anyone heard of getting Reclast 3 months after the first infusion?
Has anyone heard of getting Reclast again 3 month after getting my first dose of 5mg IV? I switched off of Prolea after 3 years due to hair falling out and after 6 months got my first Recast infusion in April. Now my 3 month C telopeptoide is much higher than my endocrinologist would like and she wants to re-dose me now with Recast because she thinks my C-telopeptide is much higher than she was hoping for. 3 months ago my Collagen Type 1C-telopeptide was 61 and now 3 months later is 477. 3 months ago my P1NP was 13.7 and now 3 months later is 32.8. I never had any side effects from my first dose of Reclast but from everything I read the dose is 5mg once a year. I think the higher 1C-telopeptide is a rebound from going off Prolea but should't the Recast takeover? I don't want to lose any more bone....Uggh, so hard to know what to do.
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I had a second infusion 6 months after the first. My doctor wants me to have another one now because CTX is not low enough. This would make it 3 infusions in 14 months. If CTX remains high, I might have to think about going back to Prolia.
I don't personally know anyone who is in a similar situation, but repeating zolendronate during prolia cessation, when needed in the first year, is mentioned in publications and in conference presentations (you can find them on YouTube). It seems your endo is monitoring things very closely and cautiously to ensure a safe and successful transition.
@dna41, what CTX level is your endo aiming to keep it under during transition? A level of 280 was mentioned frequently in several articles. Thanks!
I believe we are aiming in the neighborhood of 200's. I am currently at 424 and that has come down from 618 which was in Oct. 2024.
@dna41, it's good to know, thank you!
You are in good hands. If HRT is suitable for you, I wonder if adding it to your current regimen might be a good idea - just a thought. Bisphosphonates and HRT work through different mechanisms as antiresorptives, and HRT's effects are reversible once it's stopped.
I cannot take HRT's because I have a lot of Estrogen positive breast cancer in my family and don't want to risk it. I take Algae Cal, go to Osteostrong, walk and do resistance exercises. I think I am going to repeat my CTX in a month and see if it is trending down and then if not get another Recast infusion like my Endocrinologist wants and hope that I don't get a lot of side effects getting it so soon, 4 months after the first dose. I am 70 and my highest T-score is -2.7. Thanks!!
Hi @danaso1989 – I have a few comments on your situation.
Firstly, I’m surprised the Prolia could be the cause of hair loss as none of the major clinical trials call it out as an adverse event. I wonder if there could be another reason for the hair loss. I know hair loss is a problem for older women and even my wife is taking oral minoxidil for it with great results.
Secondly, your doctor seems to be up on the latest information on transitioning from Prolia. Their advice is spot on to doctor Bente Langdahl, who is probably the most knowledgeable doctor on the topic. I put together a presentation on Prolia that I recommend you watch to get your feet planted on the subject https://youtu.be/hnj1tFUAK3M . This will help you work with your doctor for the best results. Attached is a picture of the transition from my presentation but I discuss Dr. Langdahl’s trials if you watch the video.
Finally, I know you transitioned to Reclast due to hair loss, but at -2.7 T-Score, you really would want to switch back to Prolia at this point to get to a safer score. Moving to Reclast at this point will not likely get you to a desired result. I discuss this as well in the presentation.
I am not a doctor, but have done a lot of research. Use this information to work with your doctor.
I wish you the best of luck!
@michaellavacot, I have read of many women suffering severe hair loss attributed to Prolia. I have not double-checked the study info, but read elsewhere that it is a rare side effect.
Thank you for the suggestion. I will ask my doctor about that when I see her next.