1. < Osteoporosis & Bone Health

Reclast Infusions: Side-effects & Recovery time

Posted by cindydee @cindydee, Mar 20, 2018

I just had a reclast infusion last week and have had serious side effects. I had the worst flue like aching for 5 days then my lefty arm became full of inflammation in the wrist, elbow and shoulder which caused extreme pain and I lost the ability to straighten my elbow. Ultrasound showed huge amounts of fluid throughout the arm. The right arm is now starting to have the same symptoms. The pain is excruciating. Has anyone else experienced anything like this? Neither the ER doctor nor the Dr. who prescribed the procedure knew what to do to ease the symptoms. Both arms from fingertips to shoulder are swollen and neither elbow will straighten. Anyone else have adverse reactions to the reclast infusion? If yes, how long did it last?

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windyshores | @windyshores | Mar 12, 2023
In reply to @janmarie2023 "I am so very sorry to hear this. My heart goes out to you. I had..." + (show)
@janmarie2023

I am so very sorry to hear this. My heart goes out to you. I had this treatment one time, as well. It was about 8 years ago. I ended up in the emergency room the next day. I had some of the same symptoms including bad headache, confusion, nausea, and extreme bone pain. Please take care of yourself and feel better soon. The problem with these medications is that they stay in your system for a long time. And you can have side effects for some time. I often wonder if any rheumatologist would ever put themselves through taking this IV treatment. A year later my doctor wanted me to try Prolia. I was approved but said, "No thank you!"

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@janmarie2023 did you ever do any other meds, like Forteo, Tymlos or, more recently, Evenity? If not, how are your bones doing?

I am finishing up with Tymlos and leery for "locking in my gains" with Reclast. My doc is nervous too and will do 1/4 dose. I will hydrate well and ask for a slow infusion.

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1 reply
thehuth6 | @thehuth6 | Mar 12, 2023
In reply to @janmarie2023 "I am so very sorry to hear this. My heart goes out to you. I had..." + (show)
@janmarie2023

I am so very sorry to hear this. My heart goes out to you. I had this treatment one time, as well. It was about 8 years ago. I ended up in the emergency room the next day. I had some of the same symptoms including bad headache, confusion, nausea, and extreme bone pain. Please take care of yourself and feel better soon. The problem with these medications is that they stay in your system for a long time. And you can have side effects for some time. I often wonder if any rheumatologist would ever put themselves through taking this IV treatment. A year later my doctor wanted me to try Prolia. I was approved but said, "No thank you!"

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So sorry to hear. May I ask if you have any success with other osteoporosis medications? How are your DEXA scans?

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2121 | @leslie2121 | Mar 13, 2023

I had a Reclast infusion end of November. One of my knees swelled up, was very painful to point of not being able to bear weight on it . No previous knee problems- it resolved with rest, ice & elevation, etc. after a few days. This was within the first week.
I’m doing okay now - but my hands seem less strong- my grip is affected somehow and one thumb is painful at the base or fatty part if that makes sense.
My endocrinologist was familiar with “acute phase reactions “ but seemed unaware of anything past that.

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dmanduca | @dmanduca | Mar 13, 2023
In reply to @windyshores "@janmarie2023 did you ever do any other meds, like Forteo, Tymlos or, more recently, Evenity? If..." + (show)
@windyshores

@janmarie2023 did you ever do any other meds, like Forteo, Tymlos or, more recently, Evenity? If not, how are your bones doing?

I am finishing up with Tymlos and leery for "locking in my gains" with Reclast. My doc is nervous too and will do 1/4 dose. I will hydrate well and ask for a slow infusion.

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The standard dose for Reclast is 5 mg. Is your doctor willing to give you less? My doctor refuses to give me a lesser dosage,

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1 reply
leeosteo | @leeosteo | Mar 13, 2023

janmarie2023. How did the emergency room address your Reclast pain? How long did this pain continue? days, months?

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windyshores | @windyshores | Mar 13, 2023
In reply to @dmanduca "The standard dose for Reclast is 5 mg. Is your doctor willing to give you less?..." + (show)
@dmanduca

The standard dose for Reclast is 5 mg. Is your doctor willing to give you less? My doctor refuses to give me a lesser dosage,

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My doc is nervous about giving it to me, which is one reason I never went on it in the first place. He was nervous. He is head of endocrinology at a top hospital.

He wants to give me 1/4 dose to see how I handle it. If I handle it, he will give me more.

He is not a fan of Prolia. I need to lock in any gains from my 18 months on Tymlos.

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1 reply
lizzabeth | @lizzabeth | Mar 13, 2023

My hands are still swollen and the joints are so sore. I have arthritis throughout my body and I have had 2 knee replacements. I work out every day but have been unable to do so since the infusion. The entire body bone pain has subsided but my left arm is still swollen and I can't lift it over my head. From what I am seeing it hits the areas where you have arthritis very hard and may do permanent damage. I am getting some sleep but I awake several times a night with severe pain in my bones -not all just select areas. It has now been 2 weeks since the infusion. I am returning to working out tomorrow and fear what this will do to my pain level. This stuff cannot be good for you if it causes so many problems.

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Vestareake | @jameseugene | Mar 17, 2023
In reply to @dkapustin "Hi there. Thanks, @JustinMcClanahan for adding me. I have Osteoporosis and tried supplements, diet, and exercise..." + (show)
@dkapustin

Hi there. Thanks, @JustinMcClanahan for adding me. I have Osteoporosis and tried supplements, diet, and exercise to increase my bone density but nothing worked. I was getting worse. I also want to add that I had been active for decades so weight bearing exercises (weights, walking, elliptical, tennis) still produced a 60 year old with weak bones. Blood tests showed a healthy parathyroid and calcium and Vitamin D levels. With all of that said, I realized that Osteoporosis was a disease. A progressive disease that sometimes needed medication. I didn't want to take the drugs either but I am currently taking care of my 83 year old mother who can only walk to the bathroom due to falls and untreated OP. I spent years in skilled nursing facilities and memory care units caring for my father with Alzheimers and I've seen the lives of those with brittle bones and I just don't want to end up that way. At 62, I've had my right hip replaced, am now recovering form a right knee replacement and will get the other one replaced next year. All as a result from Osteoarthritis which is the sister of the OP. I took Forteo for a year and had no side effects but had a problem with my insurance so switched to Recast. I had the infusion last year and I followed the 3 simple rules. 1. Drink tons of water days before, day of, and day after infusion. 2. Make sure they give the infusion over a 45 minute time frame. NOT the 20 minutes they normally do. If they refuse, get it done elsewhere. 3. Take a couple of Tylenol before going to bed. I had no horrific side effects and although I have joint blame, I couldn't never say with certainty that it is a side effect from the OP drugs. But if you do nothing, lean to heavily on social media and people calling the drugs poison, you may find yourself in trouble later on. All drugs come with risks and you have to weigh the risk/benefit ratio. If you do nothing and your bone density keeps decreasing every year, you will not have a good quality of life in your elder years. I am going to fight for my quality of health and take the drugs. I do know that Reclast should only be sued for about 5 years. I also know that at some point my life, I will probably have to get on Prolia but I'm trying to use all of the other drugs first. I plan on finishing the year of Forteo and staying on Reclast as long as possible. This is certainly something you need to discuss with your doctor. If you don't trust your doctor, find another one. I do recommend seeing an RA or endocronolgist to discuss your OP because they are more knowledgeable about the treatment options for OP. But please be cautious about listening to the people calling it poison. Make your own informed decision.

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Thanks for the encouragement as I too am having a frightening feeling going in for my infusion on Wednesday. I plan to drink plenty of water and take the Tylenol in hopes that everything will go smoothly.

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candy209 | @candy209 | Mar 18, 2023
In reply to @windyshores "My doc is nervous about giving it to me, which is one reason I never went..." + (show)
@windyshores

My doc is nervous about giving it to me, which is one reason I never went on it in the first place. He was nervous. He is head of endocrinology at a top hospital.

He wants to give me 1/4 dose to see how I handle it. If I handle it, he will give me more.

He is not a fan of Prolia. I need to lock in any gains from my 18 months on Tymlos.

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I am trying to find a doc like yours. Can you send me his name? I have a hard time with most drugs and was told not to do prolia as well. But fearful of recast. I would love a cautious doc like yours.

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2 replies
lizzabeth | @lizzabeth | Mar 18, 2023
In reply to @candy209 "I am trying to find a doc like yours. Can you send me his name? I..." + (show)
@candy209

I am trying to find a doc like yours. Can you send me his name? I have a hard time with most drugs and was told not to do prolia as well. But fearful of recast. I would love a cautious doc like yours.

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Good to be fearful of Reclast. Had my first one Feb. 28. Still sick. The medicine attacks different parts of your body each day. It feels like I have poison in my body.

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