Does anyone have a solution to help manage Reclast side effects?

Posted by dingus @dingus, Aug 15, 2024

Does anyone have a solution to combat Reclast side effects. I had the infusion a year and a half ago and the side effects started shortly after I had the infusion. I still have weak legs, swelling in feet, pain in bones, dizziness (serious dizziness), cold sweats, tired all the time and nervous twitching in bones. Any suggestions?

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

Profile picture for fabpainter @fabpainter

Like others here, I also have had issues since my infusion about 15 months ago. For me, it's my right leg that has had flareups that are much worse at night. I also assume it's because I am not moving and then when I do it's incredibly painful. Same when getting up after sitting too long as in being in a car or other situation. Once I get moving, it's better but never completely goes away. I've been doing exercises provided by PT to improve muscle strength as now my right knee shows osteoarthritis. Some I stopped as it seemed to make matters worse. At this point, I don't see how it will ever improve to where I was before the infusion.

Jump to this post

I am still having back pain and muscle aches 10 weeks later. I have not tried steroids but think they may help. I feel our bodies had an autoimmune reaction to reclasp. I think they use steroids for autoimmune reaction.

REPLY
Profile picture for harborside24 @harborside24

I could not find the exact post, but below is part of another post that is essentially the same information. It will be interesting to see how my body reacts to the next dose in a year or two. I also added one Claritin per day 2 days before the infusion, the day of, and 2 days after to reduce the risk of the acute phase reaction that so many have experienced. I did not want to take steroids, as they are not good for the bones. My infusion was 45 minutes, not 60, and I began taking the 650 mg of Tylenol 2 days before as well and then followed the daily regimen below. That way it was already in my system, and the nurse did not have to administer it. Good luck to you!

First, I order the infusion nurse to dilute the 5 mg of zoledronic acid (which comes in 100 mL of D5W) into 500 mL of NS (normal saline), thereby diluting the drug from 5 mg% to 0.8 mg%. Then I order it to be administrated over 60 minutes, instead of 15 minutes. Giving an N-BP more dilute and more slowly makes it even safer for the kidneys. The 3rd thing I always do is order the infusion nurses to administer 650 mg of acetaminophen to the patient during the infusion, and I tell the patient to take at home the same dose of acetaminophen (two regular strength Tylenols) with dinner and at bedtime the day of the infusion, with all 3 meals and at bedtime the day after the infusion, and a final (7th) dose with breakfast the 2nd morning after the infusion. These 8 doses total of acetaminophen reduce the chance of a symptomatic APR from 20-30% to < 1%.

Jump to this post

The medrall pack is only 5 days of steroids

REPLY
Profile picture for kaybollinger79 @kaybollinger79

I am still having back pain and muscle aches 10 weeks later. I have not tried steroids but think they may help. I feel our bodies had an autoimmune reaction to reclasp. I think they use steroids for autoimmune reaction.

Jump to this post

Sometimes the five days of steroid can interrupt an immune reaction as they can become self-sustaining. I have heard that IV steroids are more effective with the Reclast reaction.

REPLY

I had my reclast infusion July 24 of this year… as I’m texting this I’m in the Er because I’m in so much pain in my shoulders hip knees back and ribs… I can’t lift my arm over half way without it being excruciating painful..
I don’t know what they will or can do for me here but I’m at least going to have them check everything
I did the steroid pack for 5 days it didn’t touch it..
Everyone needs to be so aware of this terrible side effects!

REPLY
Profile picture for chuckster1957 @chuckster1957

Yikes ,I'm scheduled to get a Reclast infusion in October .

Jump to this post

Please! Research thoroughly before you go ahead! FDA should be stepping up with All the potential side effect

REPLY
Profile picture for chuckster1957 @chuckster1957

Yikes ,I'm scheduled to get a Reclast infusion in October .

Jump to this post

@chuckster1957 Perhaps it would be helpful for you to know about a positive experience. I had my first Reclast infusion in May 2025 and have had no side effects whatsoever thus far. The infusion team at the center I go to told me that they rarely receive reports about severe side effects from their patients. As always with these medications, you just never know how your body will react. Wishing you all the best moving forward!

REPLY
Profile picture for annms01 @annms01

I had my reclast infusion July 24 of this year… as I’m texting this I’m in the Er because I’m in so much pain in my shoulders hip knees back and ribs… I can’t lift my arm over half way without it being excruciating painful..
I don’t know what they will or can do for me here but I’m at least going to have them check everything
I did the steroid pack for 5 days it didn’t touch it..
Everyone needs to be so aware of this terrible side effects!

Jump to this post

annms01, if you are still in the ER ask if they can give you IV steroids. I've heard that they are much more effect with Reclast side effects than the oral 5 day.
I'm sorry you are suffering.

REPLY

Thank you for your suggestion.. after finding no rhyme or reason to my pain.. saying it was probably a mix of a flare up and the reclast..
I asked them for steroids in my IV but they said since I had just been on the pack a week ago they were hesitant to give it!
I’m suppose to call my RA Dr and go in so she can visible see I can’t move … it’s just frustrating..
I would have loved the steroid in my IV .. what do I have to lose at this point!
Thank you, for your suggestion I might suggest it to my RA !
I pray you are doing well ..
the journey continues!

REPLY
Profile picture for hollygs @hollygs

@chuckster1957 Perhaps it would be helpful for you to know about a positive experience. I had my first Reclast infusion in May 2025 and have had no side effects whatsoever thus far. The infusion team at the center I go to told me that they rarely receive reports about severe side effects from their patients. As always with these medications, you just never know how your body will react. Wishing you all the best moving forward!

Jump to this post

Thank you for posting your positive experience.. I agree patients should hear those as well.. the ones of us that are experiencing the worst of course are here trying to find answers.. which I hear effects only 1-2% of patients!
Important to hand an open conversation of all side effects, even the low percentage, you could be I. That category!
I’m so glad it was successful for you .. thank you for your comment … I need to be more positive seems I’m pretty negative at this point because of my pain..so thank you for sharing the positive thoughts!!! Hugs to you!!

REPLY
Please sign in or register to post a reply.