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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findtheanswer, I'm not medical but agree with your assessment that your best option is Forteo (or Tymlos). A steroid would not make any sense for you. It is a medication that can help with painful conditions after Reclast, which you have not taken, will not take.
And while a 5 day steroid could briefly delay healing after surgery the bigger problem is that it could increase the risk of infection.
The use of these anabolics is not recommended after romosozumab because they don't reduce CTX and will increase CTX after some months of use. There is also bit of rebound in CTX recognized after romo use.
You were really smart recognizing in advance that you did not want to be sequenced out of Forteo. Your expression should have been recognized and honored. I suspect that there wasn't knowledge of the sequence issue rather than dishonoring. That is that you were possibly better informed that the physician, though it may be that your bones were weak enough to require the immediate bone bulking possible from no medication other than romosozumab.
It may be that your physician hasn't the choice of whether of not to follow protocol because they are restricted by the institution they work for, or they may just see a bigger risk for you in taking an anabolic after romosozumab because of the two confounding CTX factors.
You may be able to find a physician who will prescribe Forteo. I don't think anyone would prescribe after hearing the whole story of a previous doctor's refusal. And it is very hard work to go to doctor after doctor while you are recovering from surgery.
A default option might be low dose zoledronate followed by Forteo.
I feel the terror in your posts and am sorry you're in this position, especially after so intelligently figuring the situation in advance.

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Profile picture for findtheanswersdn @findtheanswersdn

@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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@findtheanswersdn

I am so sorry that you are going through so much.
Great Bones is a book by Keith McCormick. He is a chiropractor not an MD. He and his book are mentioned by a number of members here as a good source of information about Osteoporosis.

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Profile picture for gravity3 @gravity3

@findtheanswersdn

I am so sorry that you are going through so much.
Great Bones is a book by Keith McCormick. He is a chiropractor not an MD. He and his book are mentioned by a number of members here as a good source of information about Osteoporosis.

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@gravity3 yes, beware of some of the books…some are pushing their own products…McCormick has some good info, but there are other sources…like Mayo Clinic, Cleveland Clinic, and NIH….I have gotten a lot of useful info right here from other patients, and the info is monitored carefully.

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Profile picture for findtheanswersdn @findtheanswersdn

@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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@findtheanswersdn my endro is local here in Vermont. Of course there is always the possibility of some kind of side effects! The side effects I am experiencing he says are not from the infusion, sends me to Rheumatology, who sends me to Neurologist, who wants me to go to an orthopedic and the list goes on! I started on this merry-go- round and as doing so, I thought long and hard; “ This needs to stop” and the only person that can do that is me! It has been 19 months since my first and last infusion! I go bi-weekly to physical therapy and I am not going to be tossed around any longer. Prior to the infusion I suffered from Ankolosing Spondylitis and pain was manageable. With this infusion I don’t know what to expect from one day to the next. With that being said, it is getting a little bit better or I am learning to tolerate the level of pain and I do not need more. Good luck to you! I do feel the FDA should pull this drug off the market without further research!

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Profile picture for findtheanswersdn @findtheanswersdn

@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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@findtheanswersdn my endocrinologist is in Burlington Vermont. He never mentioned anything about the side effects and does not believe that the Reclast caused my shoulder, left leg pain that started the day after infusion, along with nausea and groin burning. The later two have got some better!

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Profile picture for nycmusic @nycmusic

@gravity3 yes, beware of some of the books…some are pushing their own products…McCormick has some good info, but there are other sources…like Mayo Clinic, Cleveland Clinic, and NIH….I have gotten a lot of useful info right here from other patients, and the info is monitored carefully.

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@nycmusic

Yes.

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Profile picture for findtheanswersdn @findtheanswersdn

@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.

Jump to this post

@findtheanswersdn

I am so sorry that you have suffered through all these issues. Dr. Kieth McCormick is a Chiropractor who also had Osteoporosis. Here is a link to his website: https://greatbonesconsulting.com/.
He does consultations for $395 He does not take insurance.

Best wishes in your bone and and healing journey!

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Doctors will tell you it’s not the reclast they are full of it. It is the reclast. Ine has lasted 6 months. I was hospitalized twice on the beginning. A good acupuncturist helped e. Asia. I still have pain, but not bad. It grudually wears off.

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Profile picture for normajean77 @normajean77

I had very severe reactions to Reclast. The FDA insert said to expect some joint pain 2-3 days after, which I had. Then, things were ok for about a week and a half. Then, one morning, I woke up in severe joint pain ALL OVER! It was so bad, I could not get out of bed. Called my endocrinologist and of course, she said she’s never heard of this. I read the FDA Drug insert for Reclast and yes, there were a percentage of patients with this severe joint pain following the IV Infusion. All I can say is I will never, ever take that infusion again!
I believe each one of you saying you had pain after this infusion. It’s poisonous!

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@normajean77 I got a Reclast infusion 11 months ago when I was 71, and had a VERY serious reaction. I will never do this again. I continue to have chronic side effects, the worst of which are recurring kidney pain, and serious joint, muscle, and bone pain. I also get recurring headaches, muscle cramps, vertigo, random whole body itching, etc. Like most everyone else, my PC doctor reacted with skepticism about it being caused by the Reclast, but since I was completely 100% healthy with NO issues when I got the infusion, and these symptoms hit like a ton of bricks 16 hours after the infusion, and have continued chronically ever since, I have zero doubts. I have looked, and I can find no real help for this. Studies have been done (posted on the Mayo Clinic site) showing the percentage of time these side effects occur, but I haven't found any answers for when they do. I was looking for how long it stays in your system, for how long this will continue to plague me. So far, here is the only answer I got, and it's not good:
"Reclast (zoledronic acid) stays in your system for a very long time because it binds to bone, with studies showing its effects and presence detectable in bone for many years, even up to a decade or more after treatment stops, though it's quickly cleared from the blood. While the drug's direct effects in the bloodstream are short-lived, its integration into bone means it can continue to work or be released slowly over years, influencing bone remodeling.
How it Works & Stays in Your Body
1. Rapid Blood Clearance: After an infusion, Reclast quickly leaves the bloodstream.
2. Binds to Bone: About half of the drug strongly attaches to bone mineral, effectively becoming part of the bone structure.
3. Long-Term Retention: Because it's incorporated into the bone matrix, it's protected from metabolism and can be released very slowly over many years.
Implications of Long Retention
• Extended Action:
This long retention means Reclast continues to slow down bone breakdown (osteoclast activity) for a long time, providing benefits long after the infusion.
• Drug Holidays:
Doctors may recommend "drug holidays" (stopping treatment) after several years (3-5 years) because the drug stays in the bones, allowing for a break while still getting benefits and reducing risks of serious side effects.
• Detectability:
Other bisphosphonates have been found in urine for years after treatment cessation, showing how long they can persist in the body.
In essence, while you don't feel the drug days after the infusion, its presence and action in your skeleton can last for years."

I am angry that I let my doctor talk me into the infusion, I am angry that I wasn't told or given a medical sheet that listed the potential issues prior to the infusion, I am angry that the drug company doesn't better inform the doctors, but I am mostly angry at myself --- I knew better than to let them put this serious drug in me, but in a moment of weakness, I caved and said okay -- something I will forever regret.

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I can relate to all that you have shared! It has been 19 months since I had my first and last Reclast infusion. I too have experienced very similar symptoms since the day after the infusion. I can say that the symptoms have either lessen some or I have built up a tolerance to the symptoms. I did consult an endocrinology pharmacist and he shared that the worst can remain for up to 18 months. Have you connected with the FDA to report your thoughts and concerns?
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.

My endocrinologist continues to express that the Reclast did not cause severe shoulder, left foot pain, nausea, light headed and constant burning sensation in my groin area. I am a male, soon to be 69 years old. I retired two years ago September and 10 months after retirement this is what I have had to deal with.
It is my thought that my endocrinologist is trained to deal with bone density, not the side effects from the various medications; a pharmacist would hold much more knowledge about the drug and its side effects.
I go to physical therapy bi-weekly and as I’ve stated, either I have become more comfortable with the side effects or the medication side effects are not as severe as they were. In addition, stress I feel plays its part. When the side effects first hit me I was beyond myself, did not know where to go, who to see, just knew that I was feeling like crap and things were not improving; many nights waking up 5-6 times a night with intense shoulder pain; now maybe once or twice a week.
Just try to remember where you were the day after the infusion and where you are today; hopefully, even a little better. You can and will beat this as I will! Just knowing, in the future, I’ll be the one to decide any additional treatment! That being said, my endocrinologist sent me to a Rheumatologist, who sent me to a neurologist, who wants to send me elsewhere and endocrinologist wants me to return to discuss my other options for treatment because I have refused any more treatment from his facility. I’ve canceled 3/4 follow up appointments and they just sent me a message Friday that they have scheduled me a follow up on September 2026 to help maintain my connection with their facility; feels more like an insurance compensation to me!
Best of luck, stay strong and you will beat this!

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