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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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nana50 | @nana50 | Jun 1 11:22am
In reply to @cherio "@cathymal just had my first reclast infusion 5 days ago - within 24 hours pain was..." + (show)
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@cathymal

just had my first reclast infusion 5 days ago - within 24 hours pain was also absolutely unbearable from toes to ears - nothing touched or relieved it! I was moved from T;ylmos to Fortero with significant side effects and was encouraged to do Reclast. My bad that I did not research - As of today 5 days after infusion am still in significan pain and can barely move my neck - grateful that body bone pain is gone but terrified it may return - I will not get this done again. If they they call this reaction flu like symptoms it is NOT and it appears enough of us have similar experience.
Share this with as many as possible before they get an infusion! I am 81 and no sissy with pain - just saying we are not being fully informed.

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@cherio Thank you for your post. I have read about so many people who have had such horrible side effects from taking the Reclast infusion and I totally agree with you regarding how we are not being fully informed. I am 75 years old and after being on Tymlos for 2 years, my doctor wants me to take the Reclast infusion next. After reading your post, I know for sure now that I will not get the Reclast infusion!!! This is my body and my decision.

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gravity3 | @gravity3 | Jun 1 1:00pm
In reply to @nana50 "@cherio Thank you for your post. I have read about so many people who have had..." + (show)
Profile picture for nana50 @nana50

@cherio Thank you for your post. I have read about so many people who have had such horrible side effects from taking the Reclast infusion and I totally agree with you regarding how we are not being fully informed. I am 75 years old and after being on Tymlos for 2 years, my doctor wants me to take the Reclast infusion next. After reading your post, I know for sure now that I will not get the Reclast infusion!!! This is my body and my decision.

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@nana50

Is it possible that fosomax/alendronate would work for you.?

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cjrc | @cjrc | 2 days ago

blisters, rash and ongoing pains throughout my body for 1 1/2 years. Does it ever go away??

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jcl75 | @jcl75 | 1 day ago
In reply to @dannyandebbie "@alenef one thing to do remember! Your endocrinologist is Lacking a lot if they tell you..." + (show)
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@alenef one thing to do remember! Your endocrinologist is Lacking a lot if they tell you your symptoms are not related to your Reclast infusion. There is far too much ligature available to support your symptoms and then some! I honestly do not know why the FDA has not pulled it from the market. I know many have reported the side effects that they have experienced; including myself. Two years later, still same symptoms along with new ones. I fear the loss of eye sight as I keep experiencing inflammation in my left eye and very light sensitive; going to Eye doctor this coming Tuesday! I had none of these symptoms prior to infusion. Best of Luck to you!

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@dannyandebbie
I had a severe reaction to Reclast which began 3 days after the infusion. Serious enough to be hospitalized. Ultimately I experienced vision loss (permanent) in my upper right eye. The diagnosis is Giant Cell Arteritis, an autoimmune disease. It's been a long road and isn't over.
JCL

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gravity3 | @gravity3 | 1 day ago
In reply to @jcl75 "@dannyandebbie I had a severe reaction to Reclast which began 3 days after the infusion. Serious..." + (show)
Profile picture for jcl75 @jcl75

@dannyandebbie
I had a severe reaction to Reclast which began 3 days after the infusion. Serious enough to be hospitalized. Ultimately I experienced vision loss (permanent) in my upper right eye. The diagnosis is Giant Cell Arteritis, an autoimmune disease. It's been a long road and isn't over.
JCL

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@jcl75

Are you saying that the reclast brought on the autoimmune dx?

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jcl75 | @jcl75 | 1 day ago
In reply to @gravity3 "@jcl75 Are you saying that the reclast brought on the autoimmune dx?" + (show)
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@jcl75

Are you saying that the reclast brought on the autoimmune dx?

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@gravity3
Yes. I was perfectly healthy three days before and the symptoms started. Reclast
did not cause an autoimmune disease. It caused the inflammation of the arteries, which is an auto immune disease. There are some legitimate studies going on which connects RECLAST and giant cell arteritis

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dannyandebbie | @dannyandebbie | 1 day ago
In reply to @jcl75 "@gravity3 Yes. I was perfectly healthy three days before and the symptoms started. Reclast did not..." + (show)
Profile picture for jcl75 @jcl75

@gravity3
Yes. I was perfectly healthy three days before and the symptoms started. Reclast
did not cause an autoimmune disease. It caused the inflammation of the arteries, which is an auto immune disease. There are some legitimate studies going on which connects RECLAST and giant cell arteritis

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@jcl75 I have had Many side effects from the infusion! Latest is constant inflammation of my left eye. I was prescribed a steroid drop, first time it did not work, second time it worked for about two week and now it is back, along with blurry vision. In addition to all the symptoms that I have experienced another new one is continuous electrical shocks in both legs and groin area should I move just right and / or cough. If I go to blow my nose I have to squat or the shock is instant. My endocrinologist says it is not from the Reclast and sends me to Rheumatology, who has no explanation and therefore sends me to Neurologist who again find nothing and suggested I see my Endocrinologist……I see a pattern here where some are getting wealthy and my pain remains. A note! It has been 2 years this month that I received my infusion! Hopefully in time my body will defeat this poison and I’ll start feeling better or more normal for a 69 year old male!

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peonies65 | @peonies65 | 16 hours ago

I had my first infusion on 6/15/26, late afternoon. They symptoms woke me up at 2:30 a.m. on 6/16/26. I could not believe how much it felt like my body was under attack. (relevant info- I've had SLE for 46 years so I am no stranger to medical discomfort/pain and have a very high tolerance).

All of my bones hurt and I started dry heaving. I was that way all day, until about 10:00 p.m., roughly. Tylenol would help a bit, but not nearly enough. I was utterly miserable.

On 6/17/26 I was tired, but only had slight pain. It was over. I will have two more doses 2027 and 2028.

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