Are you taking Reclast for osteoporosis?

Posted by Becky, Volunteer Mentor @becsbuddy, Jul 21, 2020

Two years ago I was diagnosed with pretty bad osteoporosis because of the prednisone I was on for my autoimmune disease. I started taking Fosamax (a bisphosphonate) and had no problems. Today, the endocrinologist suggested that I switch to Reclast for 3 yearly infusions. Has anyone else taken this drug? What side effects have you had?
Thanks

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Hi folks. Good to hear some people have had no problems using Reclast.

Unfortunately, I had a series of adverse reactions after a Reclast infusion in 2022. Starting the next day, developed double vision and after-images, severe dizziness, severe muscle and bone pain, and complete exhaustion.

Two days after, those symptoms started to fade, but I developed bilateral uveitis (diagnosed by an ophthalmologist). It was severe enough to require six weeks of steroid drops, and then a lens replacement.

I see nothing in the literature about any connection, but I do have several autoimmune disorders. I am also in a female in my sixties, and the literature does indicate that women over sixty are most likely to develop serious eye problems (even blindness) after Reclast infusions.

In closing, I suspect that serious eye problems after Reclast are more common than Novartis reports. There are a number of professional articles on this subject, going back decades. And the FDA believes only about 20% of all adverse reactions are ever reported.

In closing, know that I’m not giving anyone medical advice about whether to take a medication. I’m only describing my adverse reactions because I sincerely hope no one else ever experiences the same.

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@ann23

Hi folks. Good to hear some people have had no problems using Reclast.

Unfortunately, I had a series of adverse reactions after a Reclast infusion in 2022. Starting the next day, developed double vision and after-images, severe dizziness, severe muscle and bone pain, and complete exhaustion.

Two days after, those symptoms started to fade, but I developed bilateral uveitis (diagnosed by an ophthalmologist). It was severe enough to require six weeks of steroid drops, and then a lens replacement.

I see nothing in the literature about any connection, but I do have several autoimmune disorders. I am also in a female in my sixties, and the literature does indicate that women over sixty are most likely to develop serious eye problems (even blindness) after Reclast infusions.

In closing, I suspect that serious eye problems after Reclast are more common than Novartis reports. There are a number of professional articles on this subject, going back decades. And the FDA believes only about 20% of all adverse reactions are ever reported.

In closing, know that I’m not giving anyone medical advice about whether to take a medication. I’m only describing my adverse reactions because I sincerely hope no one else ever experiences the same.

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@ann23 I also have autoimmune disorders as well as kidney issues. My doc is doing a 20% dose with IV hydration and slow infusion. Wonder if you could ask about that. Have you done other meds?

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@ann23

Hi folks. Good to hear some people have had no problems using Reclast.

Unfortunately, I had a series of adverse reactions after a Reclast infusion in 2022. Starting the next day, developed double vision and after-images, severe dizziness, severe muscle and bone pain, and complete exhaustion.

Two days after, those symptoms started to fade, but I developed bilateral uveitis (diagnosed by an ophthalmologist). It was severe enough to require six weeks of steroid drops, and then a lens replacement.

I see nothing in the literature about any connection, but I do have several autoimmune disorders. I am also in a female in my sixties, and the literature does indicate that women over sixty are most likely to develop serious eye problems (even blindness) after Reclast infusions.

In closing, I suspect that serious eye problems after Reclast are more common than Novartis reports. There are a number of professional articles on this subject, going back decades. And the FDA believes only about 20% of all adverse reactions are ever reported.

In closing, know that I’m not giving anyone medical advice about whether to take a medication. I’m only describing my adverse reactions because I sincerely hope no one else ever experiences the same.

Jump to this post

I go to a retinal specialist to monitor epiretinal membrane. I asked him about Reclast since I will probably do that when I finish Tymlos. He said that a small percentage of people experience eye inflammation, my EMR is now stable enough that my risk is about the same as normal and if I did develop eye inflammation it could be treated with steroid eye drops.

So it is a potential issue, but he did not see that as precluding Reclast. Of course I would also know to get in contact with him immediately if I started to have a problem.

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I was on Prolia for 3 years with no side effects. Then had a Reclast infusion a month ago to lock in the gains since I progressed into osteopenia. I experienced all the side effects that Reclast had to offer - aching joints, nausea, dizziness, fever, fatigue for 3 days, but no eye issues. Last week my blood pressure and pulse numbers were surprisingly high. I wonder if it could be a side effect of the Reclast. Has anyone else had this experience?

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I’ve had 4 infusions of reclast over the years and have never had a reaction.
Sorry to all of you that have.

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I am currently on a four month long regimen of ultra low dose HRT and various supplements to see if I can improve my CTX score, which is currently around 650. If that number doesn't improve by the end of this treatment period, my endocrinologist and Dr. Keith McCormick have recommended Reclast. Does anyone have any experience with this particular bisphosphonate? I welcome your thoughts and suggestions.

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I have been having yearly Reclast infusions with only side effect of a headache. I was told that after 5 infusions I have to switch to a different infusion next year. Anyone else hear this?

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@ann23

Hi folks. Good to hear some people have had no problems using Reclast.

Unfortunately, I had a series of adverse reactions after a Reclast infusion in 2022. Starting the next day, developed double vision and after-images, severe dizziness, severe muscle and bone pain, and complete exhaustion.

Two days after, those symptoms started to fade, but I developed bilateral uveitis (diagnosed by an ophthalmologist). It was severe enough to require six weeks of steroid drops, and then a lens replacement.

I see nothing in the literature about any connection, but I do have several autoimmune disorders. I am also in a female in my sixties, and the literature does indicate that women over sixty are most likely to develop serious eye problems (even blindness) after Reclast infusions.

In closing, I suspect that serious eye problems after Reclast are more common than Novartis reports. There are a number of professional articles on this subject, going back decades. And the FDA believes only about 20% of all adverse reactions are ever reported.

In closing, know that I’m not giving anyone medical advice about whether to take a medication. I’m only describing my adverse reactions because I sincerely hope no one else ever experiences the same.

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How far back does Reclast go? I had thought it was pretty new.

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@susanfalcon52

How far back does Reclast go? I had thought it was pretty new.

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Reclast has been around a long time. Evenity is the med that is the newest,

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I’ve had 2 infusions of Reclast with no side effects. I take Tylenol and drink lots of water.
Today my doctor told me that my osteoporosis has improved following Reclast.

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