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?

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Profile picture for gently @gently

Carolyn, hi.
Lupus meds are much more complex: antimalarials, immunosuppressants (like methotrexate), anti-inflammatories, but more significantly the biologics targeting specific pathways.
Reclast reaction are best stopped initially because they aren't your body's response to the world, but your body's response to a specific trigger. I see two very different reactions. Long term responses can be promulgated by the cytokine reaction itself. Or they can be an allergic reaction that persists because a person is and remains allergic to something in the drug.
I'm not sure if I've answered. Ask me. I've no shortage of opinions.
Somewhere, I think in Korea, a university is trying a protocol of taking a steroid before the Reclast infusion. The steroid anti-inflammatories taken are quick short acting medications. These are the 5 day packs that are sometimes given for Reclast reactions.

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@gently
Geez, an allergic reaction never crossed my mind. Of course, that's a possibility.
Question? How long do you anticipate that an allergic reaction would last? Would you anticipate that it would wane a few weeks after the infusion but come back with a subsequent one?

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CarolynK, Reclast reactions do usually wane as the medication leaves the bloodstream, most commonly within the initial week. Some of the longer reactions are (I suspect) self reinforcing feedback from the original cytokine release. Reclast is said to have a half life of about 6 days. But zoledronate attaches to the bone and is released gradually as when it prevents the osteoclasts --the cells that break down bone-- from attaching to the bone causing cell death to these osteoclasts. In pure speculation I suspect that that is part of what is causing joint pain in varying areas in patients who have taken the infusion.
From all reports the second infusion is less disturbing than the first. But always consider a CTX reading before taking the second year of Reclast or another medication, as it is Reclast is thought to be effective for two years in most people.
Rarely individuals have been hospitalized after Reclast in anaphylaxis.
But given that the cytokine release can be self sustaining, it could be wise to consider a methylprednisolone five day pack.

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I had my reclast infusion in June 2025. Weeks later I reported to my doctor that I had new excruciating pain in my left hip and the top of my knees. Months later as the symptoms became worse (unable to use left leg) I reported to doctor who prescribed but was blown off. I don’t know if these symptoms are life long, but now Jan 2026 I continue to have pain in leg hip, pain on top of knee, and inability to bend leg in the morning upon rising. I am now stiff and it hurts to walk. I pray this will get better

Dona McEssey fond du lac Wis

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Profile picture for windyshores @windyshores

I had an hour IV hydration along with my own hydration the day before, day of and day after. My partial dose was infused over an hour. I took tylenol. I had a fever for 5 days, and some pins and needles for a couple of weeks, but nothing like what you describe. The protocol I described was to address short term effects and protect kidneys, but not sure what can be done for longer term effects. Have you discussed alternatives with your doctor, or treatment options for what you are suffering?

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@windyshores unfortunately her dr will probably deny its from reckast and say no help it stays in your body 10 years. What ever long term side effects u get are what your stuck with. This poison needs to be off market. Way more serious side effects i. Real world than in clinical trials because they only take people with osteoporosis or osteopenia in trials : exclude any other conditions that u might have so real world side effects worsen existing conditions known or unknown and make more sude effects. Pages i saw on drigs.com for side effects easily listed 150 specific sude effects at varying subtitles; common more common serious etc.

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Profile picture for mcallister1002 @mcallister1002

How long do you have to stay on Reclast?

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@mcallister1002 I read not over 3 yrs..

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Profile picture for gravity3 @gravity3

Why not a bone builder med like tymlos, forteo or evenity. Sequencing is very important with Osteoporosis drugs.. what was the rational for starting with reclast? Have you read any of McCormick s material.

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@gravity3 who is McCormick and where is his material. I would like to read. My endo mayo did not sequence me correctly before my fusion l4l5 with cage screws and rods. Didn't tell me anything about evenity or teripartide etc how to sequence correctly or that teripartide was first line for fusions because it was 2 year therapy bone builder and would carried me to surgery and then 1 year after. Now im 7 mo out, 70 years old female with SEVERLY ADVANCED VERTEBRAL DEGENERATING VERTEBRAE WHO HAD GRADE 2 SPONDY L4L5 AND MRI SAUD SLIGHT SLIP STARTING AT L1 ON L2 L2 ON L3 L3 ON L4 AND REG XRAY FROM MY HOMETOWN SAID SLIGHT L5 SLIP ONTO S1 SO I AM N LITERALLY SCREWED AND SO SCARED NO BONE BUILDER NOW IN. RITICAL TIME OF HEALING FUSION SO IT BRIDGES MY OWN STRONG BONE TO FUSE TO THE CAGE INSUDE MY DISC. IM TERRIFIED . HE SHOULD TOLD ME ALL ABOUT THE BORH DRUGS TOLD ME NOTHING. NOW THEY JUST SAY PROTOCOL IS TO DO BISPHOS ALENDRONATE, RECLAST IV *(I HAVE TO MANY CONDITIONS WRONG THAT ARE LUSTED ON SIDE EFFECTS. ) IM NOT TAKING THAT GAMBLE. I AM NOT IN PAIN NOW. I DONT WANT SEVERE PAIN ANYWHERE AND EVERYWHERE IN MY BODY, BONES, JOINTS FINGERS, HANDS, LEGS, KNEES, HIGH BLOOD PRESSYRE OR ATRIAL FIBRILLATION OR EAR DESTROYING OF MIDDKE EAR; HAD EAR PROBLEMS WHOLE LIFE FROM BAD INFECTION 40 PERCENT LISS ALREADY SURGERY MASTOIDECTOMY AND REPLACEMENT OF ALL TINY BONES DESTROYED BY INFECTION 18 YRS OLD. NO MORE EAR STUFF. NO MORE EYE INFECTIONS. HAVE CATARACTS DONT WANT THEM RUINED BY RECKAST OR PERIPHERAL NEUROPATHY WORSE ALREADY NUMB FEET 4 YEARS, THEN CANT WALK LIKE A LADY I KNOW AFTER RECLAST NOW SHE WHEELCHAIR. THIS IS NOT RIGHT. TOO RISKY THE 40 PERCENT WHO SAID TO GET REAL LIFE SUDE EFFECTS SOME DONT GO AWAY 20 TO 30 PERCENT. I NEED TERIPARTIDE NOW OR MY FUSION WILL FAIL. OR SCREWS BREAK. NOT DOING RECKAST IV OR BRITTLE BONE MAKER OLD BONE NOT TURBED OVER TO BEW BONE IS JUST OLD BPNE OVER OLD BONE LIKE BISPHOS AND PROLIA ARE. HRONIC BRONCHITIS AND COPD. LISTED BRONCHITIS AND COUGH ON SIDE EFFECTS NOT CHANCING IT. OR DOING PROLIA EITHER. I NEED BONE BUILDER. DR FAILED ME. LEFT ME TO GOOGLE EVERYTHING BOUT DRUGS AND NOW TOO LATE. I TOLD HIM BEFORE I HAD TO DECIDE I DID NOT WANT TO BE SEQUENCED OUT OF TERIPARTIDE NOW I AM. SO PISSED. SO SCARED. FAILED FUSION.ETC OR SCREWS BREAKING OR MORE SLIPPING DISCS. I NEED. ONE BUIKDER SO THEY DONT GET AND STAY SOFT AND END SPONDY AND MORE FUSION. AT 70 I DONT HAVE MUCH LIFE LEFT I WANT TO GOOD QUALITY. EVENITY IS JUST ANTIRESORPTIVE LAST 8 MONTHS SO NO DIFFERENT IF I WERE ON FOSAMAX . MONTHS THEN WANTED TERIPARTIDE TO BUILD BONE. THEY COULD DO IT MEDICALKY BUT NO ONE CARES TO DO RIGHT THING FIR EACH INDIVIDUAL PT. JUST COOKIE CUTTER ALL. I NEED BONE BUILDER NOW TO FUSE. NOT DOING RECK
LAST JUST CANT RISK MORE PAIN AND SUFFERING. What can I do who will help me at mayo do this bone builder now 2 mo after evenity. Medicare ins has it on plan at prior authorization. Next year they might take it off then I cant get it at all.

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Profile picture for dannyandebbie @dannyandebbie

No! Reclast is the only one I have taken. My endocrinologist wanted to give me an injection of something different and says Reclast did not give me the symptoms that I am experiencing and set me up with a rheumatologist, 01/29/2026. I know, there is not any medication out there that doesn’t have some kind of side effect and I’m already dealing with issues, dot need more! I just have to keep moving and try to move past my current situation. FDIC should Not allow this drug to be given with out better preparation! I, myself have issues with large amounts of fluid due to a constant burning sensation when I void due to bladded cancer from taking Zantac for years which limited my consumption of water prior to the infusion. My endocrinologist should have assisted me with this rather than just wanting to do the infusion. It’s been over a year now….the pain is constant during the day and worse at night or if I try taking a relaxing break for a day or more. Them more I move, the less it hurts but nights are awful! People really need to better review their options before listening to their doctor who evidently don’t know that much about the potential side effect from the medication they seem to just want to push onto their patients. I do know, what effects me might not you but better studies might of prevented me from receiving something that is going to to do just as much harm if not more so because of my inability to better prepare myself for their medication.

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@dannyandebbie yeah I agree. Was your endo from mayo or where. Mine didnt tell me anything about any of drugs just saud terip then or evenity. Sude effects and all I learned had to Google it. He didnt answer half my questions and I told him specifically before deciding I didnt want to be stopped from being able to do teripartide and he exactly let that happen didnt tell me i would not be able to get anyone to give me terip after evenity if I was having fusion didnt want to be without none builder then I was just so stressed bout fusion had to have I didnt think about that when started evenity that id be without bone builder then what do I do. He did not warn me about that or that terip was better in fusions because they take 24 months can to fuse with my own goid mineralization bone : not the old bone just turned over and basically recycled with having to do bisphos pillor reckast iv poison or brittle bone prolia after evenity. Told me nothing. I did not even have a face to face appointment just portal use and initial. Consult. Had to google everything I learned he didnt want to answer my many questions thru portal said to many etc and they had to drop me if I didnt keep to couple questions.

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Profile picture for debis67 @debis67

PLEASE be very careful. Reclast is POISON! I had to go on Reclast to relay off of 1 Prolia shot. 12 hours after Reclast I passed out. No warning no nothings. Then I was so sick for about a week with a fever chills, sweating, pain all over Trembling. The nurse at my Dr said it’s not from Reclast. My Dr said no more Reclast for you. I am very limited on what I can take as I had Gastric Bypass yrs ago. My CTX score is 490. Even tho my Dr said it’s ok, I’m still worried because it should be around 200s.

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@debis67 is ct. Score of 490 high i take it; what does that actually mean does it mean? Your bones are too much into remodeling and will not recover to build new bone? Should they be 200 when?

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Profile picture for dannyandebbie @dannyandebbie

If you feel that you are suffering from these medications long term to report that to FDA.
For on-line reporting to FDA: https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program
For phone reporting: 1-800-FDA-1088.

There is a lot of information online on Reclast side effects- drugs.com, the FDA and Pfizer's own drug insert: https://labeling.pfizer.com/ShowLabeling.aspx
In addition to the brief info below, Pfizer has a thorough chart with every side effect and frequency reported. Not sure why doctors don't look at this.

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@dannyandebbie I asked them if they did studies after drugs are in the realbwirld or do thru look at them they said no.

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Profile picture for gently @gently

rambol, steroids are hard on the bones, but seem to be the only real help with Reclast side effects. Some have side effects for a week that go away. Many have mild joint pain through the year. Others have a more severe long lasting struggle. Your wife may be able to get a 5 day dose of steroid which could be effective. IV steroid is thought to be the most effective. Rarely individuals are hospitalized after a Reclast infusion. There isn't any way to remove the drug from the body.
The serum half life of reclast is 146 hours. The medication attaches to the bone and releases over the year.
Anti inflammatories may help some. I've heard that exercise helps, but at some levels of pain, exercise is not possible.
I'm sorry your wife is experiencing this and am so glad you are advocating for her.

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@gently I am not taking this drug. I have had l4l5 fusion. Im not supposed to take steroids as it will cause fusion not to heal correctly. Us on. O bo e builder cuz Dr's dont care. All they care is oh I cant break protocol. Not even if it means helping my patient avoid another spondy and fusion in future because she is 70 and already has too many conditions cant get worse on this and could. Cant risk it. Im already at high risk because of fusion. Om9li actions 20 to 40 percent in normal bone . Pt higher 50 to 65 percent in low bone patients fusions either my bones break from too soft no bone builder or screws loose or break or Proximal junction kyphosis or fusion failure. Im terrified.

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