Reclast Infusions: Side-effects & Recovery time

Mine was immediately after. Nurse unhooked Reclast bag and attached saline bag.

Hi @susanjane77,

I've been desperately trying to uncover the number of consecutive/lifetime doses of Reclast that are permissible. I had the recommended five infusions (2011-15) and two more around 2019-2020. My doc recommended a drug holiday after 2015, which was ended by the discovery of several compression fractures in 2017 and after.

I see you have had six Reclast infusions (in consecutive years) and wonder if you have any info to share about the subject. I just finished Evenity preceded by 8-1/2 months of Tymlos; my spinal T-score is now at -1.0. My doc wants me to get set up for Prolia, but when I mentioned Reclast, because I had good success with it in the past, he said (in a very noncommittal voice), "You could probably do Reclast." Wait, what!!??

Thanks for any info you can provide. Happy Fourth of July!! Cheers!

@beanieone if your spine is -1.0 why are you doing any meds?

In 2017 when you had your compression fractures, what was your DEXA score for spine?

Just wondering if you have bone quality issues from so many Reclast infusions vs bone density issues. I am surprised compression fractures were treated with Reclast in 2017!

Did Tymlos after Reclast work well? Did Evenity work well after the Tymlos? ( I was the only patient in both my endos' practices to do Evenity after Tymlos, surprisingly, and I had to pester them to allow it.)

Your story may be reassuring in some ways for those of us who are doing Reclast after Tymlos, Forteo or Evenity. Many of us hope to again do an anabolic and have some effectiveness.

But sorry about your compression fractures! I have 7 and know how difficult they are. Hope you are doing well. Maybe you can "lock in" gains with one Reclast infusion and be done-?

Howdy, @windyshores, Happy Fourth!

Not sure whether Tymlos or Evenity gets credit for my -1.0 score as I did them consecutively. My lumbar t-score in 2017 was -1.8 which I think was likely a scan error; by 2019 it was -2.9. My doc only this year said he feels that the 2017/-1.8 score was a testing error and that my score was probably between -2.5 and -2.9.

My compression fractures weren’t discovered in 2017 - I seem to remember the doc wanting to rule out fractures around 2021 so I had an x-ray which detected three of those buggers. An ER visit (for Tymlos side effects) in 2022 revealed an additional T-12 burst. I was blissfully unaware that compression fractures even existed as part of the OP landscape until that first x-ray. Perhaps if my doc had been “on the ball” he would’ve ordered an x-ray in 2017, I would’ve known about the fracture, and could’ve been more proactive in preventing the next three! All frax were listed as old, healed, of indeterminate age. I don’t know if the Reclast holiday allowed for some or any of the fractures, but the doc said that once frax are discovered, a bone builder would be approved and necessary. He said, even at -2.9, he wouldn’t have prescribed Tymlos/Evenity. I should note that I had Reclast infusions beginning in 2011. By the way, my dual femur score went from -2.5 (2022) to -2.1 (2024) on Tymlos/Evenity. I am happy, but still cautious about managing risks.

I could not tolerate Tymlos (I’ve posted some of my more severe side effects in this forum) and switched to Evenity; that said, I can’t give the blue ribbon to either med. Also, outside of DEXA’s my doc does NO testing except the standard bloodwork to make sure my numbers are in line. It is my hope that I can go back to Reclast. I’m trying to switch docs as I don’t feel this one is serving me well . . . he wants me to begin Prolia. Thanks to you and several other posters here, I will refuse that med unless other extenuating circumstances make it impossible for me to begin Reclast. I don’t know if one infusion will lock in gains - that’s a question for my next doc.

I appreciate your thoughts about my frax - the last three were probably considered silent as the pain was either non-existent or slight. I still have some sciatica, but I’m working with a chiropractor which seems to help. So there’s that ;).

I am sorry to hear that you’ve had seven CF’s. It sounds like you’ve suffered more from them than I ever did as only my first one was truly painful and a “hard” recovery. I have, to date, lost about an inch in height and I’m trying to combat the “hunch” as well.

I appreciate your concern and your posts. I’ll keep you and everyone posted about what my doc has to say about Reclast post-Tymlos/Evenity.

Ta-ta for now! Cheers!

I did not get a response from my doctor about ordering a slower infusion, so I asked the scheduler about this when making the appointment, she checked with a nurse who said that could be done and asked me how slow I wanted the infusion to be. I just want to note that my appointment is upcoming so I hope but don’t know if this will actually happen.

Hi @beanieone ,

I certainly can understand your concern about Reclast. I have six and during the last one(last November) the infusion nurse mumbled something about it being my last. I questioned her and she said to speak with my doctor. What??? Well try and get an appointment to speak to her.

I just had my bone scan the other day and have not heard the results. I am scheduled to see my doctor in two weeks to discuss the results and infusions. I will be curious as to what she says after having six infusions. Do I need another one and if so, will she change it from Reclast. I have never had any side effects from Reclast. If you call a headache or minor fatigue a side effect, then I had a side effect.

Oh by the way, I have never had any fractures but I did receive a diagnosis of osteoporosis 2 years ago after my DEXA score.

Will be happy to report back to you after my appointment!
Stick with the Reclast if it agrees with you and the doctor says you can have. I hear other drugs are loaded with side effects for some. I hope I do not need to change if I still need infusions.

Happy 4th and I hope I addressed some of your concerns.

@susanjane77 I have been told Reclast is given 3-5 years. It is an anti-resorptive that increases bone density by lowering the bone turnover rate. Over time (according to my doctor, the book "Great Bones" by McCormick and numerous videos) that means lower quality bone so higher risk of atypical femur fracture or jaw necrosis. Still rare apparently, but that is why doctors usually prescribe a drug holiday at some point. Hope your DEXA is good and you can stop for awhile. Reclast stays in bone for years I was told.

Thanks @susanjane77, I was very interested in your history with six infusions in consecutive years; I maxed out at five. My doc told me that Reclast remains in ones system for quite awhile, so perhaps I can prolong my infusions by getting one every other year???

I hope to meet with a new rheumatologist within the next few weeks to have all of my questions answered - as I just finished Evenity, it’s a priority visit, but I need to get approval from my current doc, the new doc, and the department heads in two facilities!

My fingers are crossed for being able to get another turn at Reclast as I’ve had a four-year hiatus and had no side effects during/after treatments.

I’m so glad to hear you’ve not had any frax and I’m sending you good thoughts for your scores to be great! Hopefully with the meds and avoiding “risky behavior” 😉 I can avoid any future problems. I now need to work on a stronger core to support the new bone that’s been created. Hoping to hold onto that spinal -1.0!

Cheers, have a fun weekend!

@beanieone There is good evidence that Reclast can often be taken far less often than every year perhaps every 2 years. . I'm guessing the only reason it's given every year (besides the profit motive) is that doctors (and patients) want to simplify things. Just give it every year and you do not have to use bone markers to know if it's still lowering bone cleanup. If you track your bone markers, ctx in this case you can wait until the ctx starts to climb before having another infusion. That could be 2 years or even more. Lani Simpson said recently that if your ctx is around 200 do not repeat, at 250 or 275 maybe repeat.

Thanks for weighing in, @awfultruth!

Since my doc informed me that Reclast stays in one’s system for a “long time”, I too have wondered why I was given five annual infusions followed by a drug holiday, then two more before Tymlos/Evenity which I just completed on June 27. I’m not sure how much was really known about Reclast when I had my first infusion (2011).

I asked my doc if there was any way to monitor bone growth/deterioration after Tymlos, Evenity, and Reclast; he said the DEXA was the only test necessary and then only one every two years because “bone grows slowly”. Of course, I had to chase him down the hallway after my appointment without so much as a “things are fine” or “do you have any other questions”. After reading your post about CTX markers, a light bulb came on in my head. What a simple, non-invasive check for what’s happening with our bones. I am happy that I will be able to see another rheumatologist on the 12th for a second opinion about my future treatments. I will add the CTX question to my list.

A heartfelt thank you to you and all the other members of this board who have given me a wealth of information on ways to combat OP. Cheers!!!