Reclast infusion

Posted by mcgeehin @mcgeehin, Mar 2, 2023

Has anyone experienced left sided abdominal pain several months after a Reclast infusion?

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@loriesco

if you have pain it COULD BE because it it boosting your immune system to do its job.
Also, the bone spur.... who knows....I'd be cautious about saying the medication is responsible. I have them all over my spine without the medication. it is common for post-menopausal women. it's kinda like wirey hair and facial hair growing after menopause - there are bone spurs! (osteophytes!) 😩 they don't necessarily do anything bad unless they press on nerves.

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Either way I’m personally done with RECLAST, and now my dr doesn’t recommend taking any more. So many possible side effects with all drugs… just watch commercials on TV! My mom always said “getting old is not for whimps”…. I feel like a whimp. 😳

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@barbara71

Either way I’m personally done with RECLAST, and now my dr doesn’t recommend taking any more. So many possible side effects with all drugs… just watch commercials on TV! My mom always said “getting old is not for whimps”…. I feel like a whimp. 😳

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Yes, I get it, I’ve never had such a bad reaction but when they opened me up in spine surgery and my C5 certainly rate fell apart in their hands we all were shocked. I fell backwards last week. The edge of a stone step went right into that C5 area of my neck. I would have broken my neck if that protective rod wasn’t placed there. It saved my life. Of course, I wouldn’t have fallen that way if I wasn’t limited in my mobility to look down. Of course I would t have needed the rod if my neck bones were STRONG. I know 6 women who fell in their 60s to early 70s this year. ALL of them fractured their bones. I’m staying on this. My dr. Offered me to go on something else. I said no, this is the best. I have long had experiences with god awful medication which has saved my life. Like the tv commercials also say “your doctor thinks the benefits outweigh the side effects.” Since I’ve been on other meds which painfully ramp of my body to attack itself I am thinking I will do this and be done in a few years for the rest of my life. My experience with the regulated ribaviran interferon was that when it killed the virus in my joints the “wishing I was dead because it would be such a relief rather than enduring this” feeling subsided. So I’ll stay. You may want to look at at other medications. Your mother was certainly right! 🙏🏼💐💗 good luck!

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@hopeful33250

That is wonderful that you had successful joint replacements, @pammy816.

How great that you like to exercise. I love to exercise as well. I agree with what you said about finding a good exercise program with osteoporosis. I found a program on YouTube by AIM Fitness that works quite well for me. These are specifically designed for folks with osteoporosis.
Here is a link to those videos,
https://www.youtube.com/@AIMFitnessActivitiesInMotion
At this point, I'm considering Prolia as it is an injection every six months, rather than a year. In the meantime, I might go back to Evista, which I took for a number of years when I only had osteopenia.

It's a difficult decision, that's for sure. Do you have another appointment to discuss treatment?

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I was on Evista for 5 years and my Osteopenia transitioned to Osteoporosis. I just met with my doctor who recommend Fosamax. Because I have a sensitive stomach to begin with, I decided on an annual infusion of Fosomax. I can’t seem to find a forum on this. I am curious how long the side effects might last after an infusion. I recognize everyone responds differently.
Thanks!

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@waterlover

I was on Evista for 5 years and my Osteopenia transitioned to Osteoporosis. I just met with my doctor who recommend Fosamax. Because I have a sensitive stomach to begin with, I decided on an annual infusion of Fosomax. I can’t seem to find a forum on this. I am curious how long the side effects might last after an infusion. I recognize everyone responds differently.
Thanks!

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@hopeful33250 I believe your doctor must have been referring to Reclast which is an annual infusion and also a bisphosphonate, like Fosomax. So this is a good discussion place for you!

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@pammy816

Dr recommended fosamax after my dexa scan showed worsening osteoporosis in my spine and hip. I took for 2 weeks and on second week had a reaction to the fosamax( (joint,muscle aches all over). Stopped the meds
My Dr recommended I see endocrinologist. She has recommended reclast if bloodwork is good. I am nervous about the infusion based upon my reaction to the fosamax and other comments on this site. I am concerned about lingering side effects long term. I do have some arthritis and wonder if the infusion with make it worse. Any thoughts or suggestions?

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In 2008 I took Fosamax for about 3 months. No GI issues but one day I could hardly put weight on my right leg. I had pain from the hip on down. I stopped taking the med and my chart was flagged to not have it again. Over all these years, my numbers didn't change that much-not good but not worse. Fast forward to 2023 and a worsening in my spine alarmed me. In January of this year I agreed to try Reclast after speaking with friends and family who had no issues. The infusion was fine then about 10 hours later I had extreme pain in my ribs, side and upper back, dizziness and fever. It subsided over the course of the next day and after several days I felt fine. About 2 months later, I began having a lot of musculoskeletal type pains in my leg, both knees and hand. It lasted about 3 months with varying degrees of discomfort then abated for about a month only to begin again recently. My Dr. said that about 40% of people have similar side effects. It has affected me in a way that I could not be as active as before-walking, hiking, even gardening sometimes is difficult. I'm not sure the trade off is worth it. I won't know until my next scan but am leaning toward not repeating this medication come January. Everyone is different but I wish I had known this before taking it as it affects my quality of life.

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@fabpainter

In 2008 I took Fosamax for about 3 months. No GI issues but one day I could hardly put weight on my right leg. I had pain from the hip on down. I stopped taking the med and my chart was flagged to not have it again. Over all these years, my numbers didn't change that much-not good but not worse. Fast forward to 2023 and a worsening in my spine alarmed me. In January of this year I agreed to try Reclast after speaking with friends and family who had no issues. The infusion was fine then about 10 hours later I had extreme pain in my ribs, side and upper back, dizziness and fever. It subsided over the course of the next day and after several days I felt fine. About 2 months later, I began having a lot of musculoskeletal type pains in my leg, both knees and hand. It lasted about 3 months with varying degrees of discomfort then abated for about a month only to begin again recently. My Dr. said that about 40% of people have similar side effects. It has affected me in a way that I could not be as active as before-walking, hiking, even gardening sometimes is difficult. I'm not sure the trade off is worth it. I won't know until my next scan but am leaning toward not repeating this medication come January. Everyone is different but I wish I had known this before taking it as it affects my quality of life.

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Hi - I had my first (and last) Reclast infusion in March of this year, and my life has completely changed. I was very sick for 5 days after the infusion, and have been left with chronic pain in both hands and feet, and 1 -2 times each month an episode of all over body pain that leaves me in bed all day. I was very active prior (yoga, walking, weights, even hip-hop dancing classes), and now I cannot walk more than a block due to the foot pain and cannot work as I cannot be on a computer more than 10 minutes at a time. No doctor seems to know what has happened or how to mitigate it.

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@lwmarcrum

Hi - I had my first (and last) Reclast infusion in March of this year, and my life has completely changed. I was very sick for 5 days after the infusion, and have been left with chronic pain in both hands and feet, and 1 -2 times each month an episode of all over body pain that leaves me in bed all day. I was very active prior (yoga, walking, weights, even hip-hop dancing classes), and now I cannot walk more than a block due to the foot pain and cannot work as I cannot be on a computer more than 10 minutes at a time. No doctor seems to know what has happened or how to mitigate it.

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I'm sorry to hear about your experience. I think there are quite a few of us in this strange cycle where pain comes in episodes. We were scheduled to go on a trip this summer and just weeks before I wondered if I could do it. Then the week of the trip my pain let up significantly and I had few issues despite all the walking involved. I plan to take note of the episodes , hoping for some kind of understanding. When I spoke with my doctor I said that though this may help the bones, it does little good for me to lose mobility I once had. Best wishes to you and I hope to follow your experience here.

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@fabpainter

In 2008 I took Fosamax for about 3 months. No GI issues but one day I could hardly put weight on my right leg. I had pain from the hip on down. I stopped taking the med and my chart was flagged to not have it again. Over all these years, my numbers didn't change that much-not good but not worse. Fast forward to 2023 and a worsening in my spine alarmed me. In January of this year I agreed to try Reclast after speaking with friends and family who had no issues. The infusion was fine then about 10 hours later I had extreme pain in my ribs, side and upper back, dizziness and fever. It subsided over the course of the next day and after several days I felt fine. About 2 months later, I began having a lot of musculoskeletal type pains in my leg, both knees and hand. It lasted about 3 months with varying degrees of discomfort then abated for about a month only to begin again recently. My Dr. said that about 40% of people have similar side effects. It has affected me in a way that I could not be as active as before-walking, hiking, even gardening sometimes is difficult. I'm not sure the trade off is worth it. I won't know until my next scan but am leaning toward not repeating this medication come January. Everyone is different but I wish I had known this before taking it as it affects my quality of life.

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Thank you for your detailed reaction to Fosamax and the Reclast infusion. I am so sorry you had the reactions to both! It sounds like when you were taking the Fosamax you may have had what they describe as “an atypical femur fracture” but maybe not if you recovered quickly.
Your reaction to the Reclast is what really frightens me about the infusion. My Dr. said 3 or 4 days with flu like symptoms but no one wants to discuss lingering reactions to the drug that could last for months like you or come and go. I am fully aware that one persons experience may not be the same as another, however, my Dr. didn’t relay any lingering side effects, she kinda brushed it off and she certainly didn’t talk percentages(40% is a lot in my opinion).
I have arthritis in some joints and have had a knee and hip replacement so I am truly nervous about how I will tolerate the effects of the infusion.
I do feel like you. Our quality of life is important. I try to stay active as much as possible and most days have no ongoing pain to deal with except the arthritis, which I can deal with. In the meantime, I am still in limbo regarding what to do. I appreciate your reply.

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@pammy816

Thank you for your detailed reaction to Fosamax and the Reclast infusion. I am so sorry you had the reactions to both! It sounds like when you were taking the Fosamax you may have had what they describe as “an atypical femur fracture” but maybe not if you recovered quickly.
Your reaction to the Reclast is what really frightens me about the infusion. My Dr. said 3 or 4 days with flu like symptoms but no one wants to discuss lingering reactions to the drug that could last for months like you or come and go. I am fully aware that one persons experience may not be the same as another, however, my Dr. didn’t relay any lingering side effects, she kinda brushed it off and she certainly didn’t talk percentages(40% is a lot in my opinion).
I have arthritis in some joints and have had a knee and hip replacement so I am truly nervous about how I will tolerate the effects of the infusion.
I do feel like you. Our quality of life is important. I try to stay active as much as possible and most days have no ongoing pain to deal with except the arthritis, which I can deal with. In the meantime, I am still in limbo regarding what to do. I appreciate your reply.

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Yes, it's' very hard to decide with all the experiences noted, good and bad. I joined a private Facebook group recently-Recast Support Group-to try to narrow those experiences down to just Reclast users. I am finding it helpful. Best wishes on your decision.

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@fabpainter curious why you never had a bone builder like Forteo, Tymlos or Evenity.

I have seen that 40% figure for joint pain with Evenity but not Reclast. Of course the list of possible side effects with Reclast- or any of these drugs- is quite long. But many do fine.

I find Facebook groups to be more negative than this forum.

I am not without side effects from any of the drugs I have taken for bones- Tymlos, Evenity, Reclast but I also have several fractures that are painful and disabling. I can barely lift a water bottle. So it is good to weigh risks and benefits.

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