Reclast side effects

Posted by dingus @dingus, Aug 15 2:24pm

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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@windyshores

@gravity3 me too! I am 74. Maybe you could do Prolia at 85 instead of 80!!!! Let's hope for longer life, though after taking care of my mother, not sure what the best expiration date is for me !

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I am almost 73. I was started on Prolia about 7 years ago and now I have been told need to discontinue and use Reclast infusion instead. I had never used any other prescription for bone loss. I believe I'll live to at least 83. I understand after using the Prolia I need to use something, however Reclast seems it needs to be greatly improved.

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@suslirsdlmayo72

My endocrinologist wants me to stop the Prolia as I am now have osteopenia not osteoporosis. I did loose my hair , big time. I now wear hats or wigs. Did not have bad side effects that I attributed to Prolia. Anyway , no endocrinologist wants me to start me on IV infusion of Reclast, which he says will last for several years. From what I have been researching, I don't want to be near that stuff. Not sure what to do next.

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Thanks for your reply. It's interesting that your endocrinologist doesn't want to prescribe Reclast. He's right. I had one 5 mg infusion a year and a half ago and am still suffering from the side effects. Yes, it lasts at least 5 years, per the documentation. It's not worth it. I took Evenity for a year and I was tired all the time. Not sure if that was from the Evenity. Some side effects are ambiguous. But not the Reclast. Those side effects were obvious.

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Many people do Reclast without side effects.

I have some GI bloating and am losing hair. I can't be sure either is from the Reclast,

The side effects are negligible for me compared to my experience with fractures.

@@suslirsdlmayo72 given your age can you continue on Prolia? Otherwise it seems your doctor will want Reclast to prevent rebound fracures. Maybe you only need to do one infusion! Ask your doctor about that!

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@dingus

Thanks for your reply. It's interesting that your endocrinologist doesn't want to prescribe Reclast. He's right. I had one 5 mg infusion a year and a half ago and am still suffering from the side effects. Yes, it lasts at least 5 years, per the documentation. It's not worth it. I took Evenity for a year and I was tired all the time. Not sure if that was from the Evenity. Some side effects are ambiguous. But not the Reclast. Those side effects were obvious.

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I made a typo error in my post. My endocrinologist does want to start me on IV infusion of reclast.

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@suslirsdlmayo72

I made a typo error in my post. My endocrinologist does want to start me on IV infusion of reclast.

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@suslirsdlmayo72 most people do fine on Reclast. I am sorry for those who suffer on it and don't mean disrespect. If you are sensitive, ask your doctor if you can have a lower dose, IV hydration and a slower infusion (one hour). Take tylenol. I believe 40% have a flu like reaction to the first dose and then that tends not to happen again, according to what I have read.

If you have been on Prolia, not sure what choice you have to avoid rebound. You could take oral Fosamax (alendronate) but some say it isn't as potent against rebound from Prolia. One person posted about doing Evenity after Prolia but not enough info on that yet and you would have to do Reclast of Fosamax after that!

I am sensitive to just about everything and have handled Reclast well but at a lower dose with the above protocol. Reclast has been around for 22+ years.

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@dingus

Has anyone had any gastro problems with Reclast? I think I saw some posts awhile back, but can't find them now. I've been having serious bloating for some time, and wonder if the Reclast could be the reason for it. Please post if you've had gastro problems since your Reclast infusion.

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No gastro problems whatsoever. My doctor was very conscientious about prescribing a medication that wouldn't affect my intestinal tract because I had major intestinal surgery in the past, bleeding ulcers, and an intestinal blockage. Happy to tell you I have no problems with Reclast, intestinal or otherwise. Thank Heavens!

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@suslirsdlmayo72

I am almost 73. I was started on Prolia about 7 years ago and now I have been told need to discontinue and use Reclast infusion instead. I had never used any other prescription for bone loss. I believe I'll live to at least 83. I understand after using the Prolia I need to use something, however Reclast seems it needs to be greatly improved.

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Reclast is working just fine for me. But remember, we are all different so a medication that is fine for me might not work for you. Evenity was horrible. Many side effects.

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@dingus

Thanks for your reply. It's interesting that your endocrinologist doesn't want to prescribe Reclast. He's right. I had one 5 mg infusion a year and a half ago and am still suffering from the side effects. Yes, it lasts at least 5 years, per the documentation. It's not worth it. I took Evenity for a year and I was tired all the time. Not sure if that was from the Evenity. Some side effects are ambiguous. But not the Reclast. Those side effects were obvious.

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I've had no side effects from Reclast. I had my first infusion a month ago. It was my last hope. Prolia didn't work. Fosamax didn't work. Evenity made me very sick, heart palpitations, swelling of the face, and headaches. My doctor at the time said he never had a patient who experienced such side effects which was a flat out lie. I'm praying for good results from Reclast.

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@susanfalcon52

dingus,
This is not true for all of us. I had zero side effects from Reclast.
Is it a gamble? Of course. Everyone is different.

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Same here. No side effects with Reclast and took it for 5 years. Unfortunately, i was informed that was long enough and need to switch😔

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Had my 3rd Reclast infusion in August. 2024. Never had side effects other than minor ache/headache within 3-5 days after. Pls note: I was given this dosage 6 mos early because I fell on ice in January and broke my wrist, so was told I should have a booster. Three weeks later, I started experiencing bone/joint pain - debilitating joint pain. Literally, had to fold myself out of bed, car seats, plane rides. And all over - from feet to hips, shoulders, neck, back fingers and toes!
My bone specialist said "usually only get side effects within first few days; check with your PCP." I waited a few mos., (there were some days of less pain here and there), then saw my PCP who ran tests (even Lyme and auto-immune) - all negative. Last week, actually had a few days were pain was much less; I was hopeful. Thursday it started again - pain level 9 out of 10 (and I have very good pain tolerance)
Yesterday, I wrote to my Bone specialist and sent all the tests. I asked if it could be bone growth (maybe wrong term). She replied "Reclast is not a bone grower and very inert after 2 das. The fact that you tolerated 2 prior infusions concerns me that this is a red herring..." So, she ordered me several tests to have done this week.
The fact that this started 3 wks after a "booster" infusion, forgot to mention jaw clicking which I never had, makes me feel this is related. Hoping it's nothing else -- stay tuned.

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