Reclast Infusions: Side-effects & Recovery time

There is so much suffering on this thread. I have friends who are declining meds after coming on an osteoporosis forum. If some readers of this forum have osteopenia or mild osteoporosis, I think it is an option to avoid Reclast or any meds for that matter.

For those of us with severe osteoporosis and/or fractures, who have done anabolics (or even Prolia or Prolia after anabolics) Reclast (or Fosamax if we don't have GERD) seems unavoidable. Or we lose the gains we already suffered side effects for.

I don't feel I have any choice. I take some comfort in the thought that the many who do well are not posting. It has helped me to 1) request a lower dose (2mg is apparently not uncommon, and it has been speculated by some doctors that it could be effective- I actually have 1mg due to kidneys and afib) 2) request an hour long infusion 3) hydrate well or request IV hydration/dilution 4) request CTX periodically so see how long it is safe to go between infusions, since some doctors say it could be 18 or even 24 months rather than 12.

If we truly cannot tolerate any bisphosphonate after an anabolic, and our bones are still not good, what else can we do? After Prolia the alternative to bisphosphonates seems even more dire. We need more research and fast.

I am going to request more time on an anabolic rather than rely on Reclast for 3-5 years and hope for a drug holiday. I am not sure my doctor will agree. I don't want to use up the allotted time on Reclast all at once since I hopefully still have 15 years left.

If I said my primary, I apologize. My physical therapist suggested I stay away from any infusion and focus more on the proper exercises to help keep me physically fit and no one could or can say if the pain will ever go away

We often hear about a time limit for the number of ReClast infusions. Is the limit really on a years basis or a mg basis? Five years at the standard dosage of 5 mg each time loads our bodies with 25 mg. If we can reduce the dosage, and throw in a few holidays, could we stay on ReClast for maybe 10 years? Rhetorical questions as none of us have the answer.

I feel that for the sake of research, I need to post my Reclast experience again.
I prepared as best I could - Tylenol, hydration- and had no side effects. None.

@normahorn since I am doing a reduced dose I plan on asking about this. I am supposed to be doing an infusion 4 times/year to get what is considered the normal dose per year, but I am delaying my 3rd since my CTX is still low.

Your question is extremely important since none of us have been given a long term plan and we may have quite a few years left.

For example, for me personally, with Tymlos (2 years), Evenity (1 year- though I only did 4 months), Reclast (3-5 years) the total is 6-8 years so what happens after that? Not Prolia, since that would require Reclast again and I don't want to take it anyway. Forteo is now okay for more than 2 years for a limited number of us but effetiveness may wane after 1 year.

At what point does Reclast succeed in "locking in gains"? The rest of the time is to build bone densiity. If gains from previous meds are achieved by Reclast in one year, I would want to go back to do Tymlos, or maybe alternate Evenity for 4 months with Reclast. These are things I am going to discuss with my doctor and will report back. I know there are ongoing studies....

Maybe doing less Reclast less often will extend the duration of treatment as you say.

This is all speculative and based on my own situation and not advice! We all have individual situations to discuss with our doctors.

I had 3 Reclast infusions over a 4.5 year period; last was July 2023. I had a few days of feeling blah, mild flu-like symptoms. My femoral neck is barely in the osteopenia range, everything else morphed from mild-moderate osteoporosis to mild-moderate osteopenia. I also take calcium/magnesium citrate, and do weights and other resistance training. I'm 70. My next DEXA scan will likely be next year, so hopefully to bone density continues.

I find it obvious that a lot of you on here have done some rather extensive research on treatment and options. Honestly, I see some talk about DEXA scan, CTX, Prolia and Reclast infusion dosage. I lack a great deal of knowledge evidently. I have a bone density test preformed and my endocrinologist expresses that I have the onset of osteoporosis and will require Reclast infusions until my count comes within a normal range. Well, I refused any treatment at first. Six months later, I received a call from the endocrinologist asking if I were ready for the infusion, “ Yea, I guess so”. I go and get the infusion which might have taken no more than 10 minutes to have done and I go home. I felt okay the first day or two and then I felt achy all over and could hardly move my right arm without assistance from my left arm. I felt nauseated and still do off and on; I blame that on stress from the pain, not sure what the real reason is. Six months later and the pain in my shoulders might wake me two or three times a night. At first it really bothered me; I try to ignore it now and just go back to sleep. I continue physical therapy as long as my VA insurance will cover; which they expressed will end the first of February. My endocrinologist says I NEED a second infusion in June 2025 and it is important that I follow up with a blood test a week prior. I try to not focus to much on this because it is six months out. However, that time is going to come that I will have to address this issue and I truly fear a repeat of the last infusion and the pain was almost unbearable. I find myself telling myself to cancel the follow up appointment and just go on with my life. I’ve been retired for a little over a year and really have had zero time to try and enjoy a day because of this continuing pain I am experiencing on a daily basis. No one ever told me to stay hydrated or take anything prior to treatment. I have difficulty consuming a lot of fluids because I’ve had bladder cancer 5x over the corse of 13 years and a nerve or something got damaged because every time I have to urinate it burns like a bad UTI. I do understand the importance of staying hydrated. Since the Reclast infusion the burning has increased some, which does not help the desire to consume additional fluids. At one point I did try to increase my fluid intake thinking more fluids might put out the fire, well, that did not work. Most days now I just try to stay busy and try not focus too much on physical ailments until an alarm goes off and I have to deal with it. I honestly do wish you all a lot of luck on your treatments and results. I feel, sometimes just knowing that someone else cares and has or is in the same boat does give a little comfort and maybe that is all I need because I honestly do not want a second infusion so I can continue feeling like I’m on my last days, especially mobility wise! I’m only 68 years old and have way to many things to get done around my home!

@dannyanddebbie you might want to get a copy of Keith McCormick's book "Great Bones."

You can have IV hydration (I also cannot seem to tolerate drinking much and have kidney disease) and an infusion can last an hour. Given your reaction you could ask about a lower dose ( 1mg or 2 mg).

Many of us get pretty sick with fever after the first infusion but not the second or following ones.

But you have lasting effects. If your bone density shows mild osteoporosis perhaps you can put off treatment (talk to your doctor) or seek an second opinion. You could do a consultation with Keith McCormick (website is osteonaturals.com) after reading relevant parts of his book.

Can you tolerate Fosamax (alendronate)? If you have GERD that can be tough but it is shorter acting and might be safer for you- I really don't know! It is a pill form of bisphosphonate unlike the infused form of Reclast.

I am hoping your new DEXA is at least improved given your suffering. And I hope your doctor or McCormick can come up with either a way to make a bisphosphonate tolerable or help you with alternative paths.

I have been in the osteoporosis world for 19 years and have 7 spinal fractures. That is the only reason I have made the effort to research and ask my doctor questions, and the reason I am on here at all!

Thank You, I’ll try and look into my options!

No side effects with my first Reclast infusion either. Had it this past Friday Dec. 20th and it's Monday the 23rd now... had 10 cups of water starting the day before and for two days after. Kept it simple and easy by drinking from a two cup glass measuring cup and went about my day making sure to have five of those. Had one extra strength Tylenol (as that's all I had at home) the morning of, one when I got home and 1/2 of one before I went to bed and another two halves in the morning and afternoon of the next day. (As for the 2 cup glass measuring cup as drinking glass: I confess it's a habit to drink water from it anyway as I get caught up in other things and forget to drink and then pay for it in foot cramps at night.. so far only once I forgot to get a nice mug instead and the eye brows went up during a ZOOM call...)