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.

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.

REPLY
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 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.

REPLY
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.

Jump to this post

@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.

REPLY
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.

Jump to this post

@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!

REPLY
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.

Jump to this post

@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!

REPLY
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.

Jump to this post

@nycmusic

Yes.

REPLY
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!

REPLY

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.

REPLY
Please sign in or register to post a reply.