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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Profile picture for dannyandebbie @dannyandebbie

@lwidstrand Yes, it sucks! First off, we need todo deep research before we allow any chemicals into our bodies. A pharmacist has Much better knowledge about medication than Any doctor. Remember, a rheumatologist only knows what one needs to bring numbers into perspective to what their little chart says! I feel for you and your ailments! Don’t look at it with another 18 months; easier said than done, I know first hand! I have a follow up appointment with my endocrinologist who thinks I am having another infusion. No, I am not….i want another bone density test done to see if the one I had did anything for me; after all, I already know what it did against me! Try to stay strong and as active as you can ! Please write a journal and you will be able to note the progress each day! Yes, there will be days where you do not see much and then days of improvement. I have a ways to go but I will not be receiving any more treatment! Lots of good luck. You might want to share your experience with the FDA!
For on-line reporting to FDA: https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program
For phone reporting: 1-800-FDA-1088.

There is a lot of information online on Reclast side effects- drugs.com, the FDA and Pfizer's own drug insert: https://labeling.pfizer.com/ShowLabeling.aspx
In addition to the brief info below, Pfizer has a thorough chart with every side effect and frequency reported. Not sure why doctors don't look at this.

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@dannyandebbie thank you so much for your help. Great advise. Will start a journal. Did report the drug to FDA. Your encouragement helps so much. Again my doctors have been no help. My friends and family really can’t understand what this Reclast has done to me. I will never trust doctors ever again. Hope things are going better for you.

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Profile picture for dannyandebbie @dannyandebbie

@marytlemons it sounds like fluid retention! You need to be a strong advocate for yourself! I’m not trying to scare you but if you are building up retention fluid there is medication for it! Just saying!

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@dannyandebbie Thank you for responding! A few people have mentioned similar side effects which helps to know it is likely from the infusions. I was wondering about medication for the fluid retention, will ask my doctor. Thank you.

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Profile picture for lwidstrand @lwidstrand

@dannyandebbie thank you so much for your help. Great advise. Will start a journal. Did report the drug to FDA. Your encouragement helps so much. Again my doctors have been no help. My friends and family really can’t understand what this Reclast has done to me. I will never trust doctors ever again. Hope things are going better for you.

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@lwidstrand it’s not so much trusting your doctor, they only know what they are taught! A pharmacist study’s medication, better to see one of them or research the medication and its side effects. Still, my endocrinologist says, 1 in a million will have side effects; must be a lot of people between them millions!

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I wish we would stop minimizing adverse effects by calling them side effects. Side effects can be either positive or negative. A side effect of Tymlos might be stronger finger nails. Another positive side effect is weight loss upon using Ozempic, It was approved as a diabetes drug and the side effect has turned into a whole new usage for the drug. That weight loss would be an adverse effect if the diabetic patient is already thin and should not lose any more weight. Psychologically the term "side effect" carries lots less weight.

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When I got my infusion in June it hit my muscles, especially my back my joints and wound up in emergency room. My hands swelled up like the Pillsberry puff boy. They had to cut my rings off. My doctor refuses to believe it was the reclast. Of course it all started the night. I took it with fever chills, swelling .
I am switching doctors.
It will be six months soon and I’m still having back pain knee pain and sometimes pain in my fingers and wrist. Nothing is as bad as it was. I did have acupuncture and I think it helped.
I have been reading things about the auto immune system that have changed since we had the Covid vaccine. Possibly this was a reaction because of Covid vaccine made my immune system go into overdrive. I felt like my body was attacking itself.
Just know that things to get better, but it’s very slow.

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Make sure you can take the meds prior to getting worked on and approved from your doctor. and God bless you and have a blessed day.

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Profile picture for njhornung @normahorn

I wish we would stop minimizing adverse effects by calling them side effects. Side effects can be either positive or negative. A side effect of Tymlos might be stronger finger nails. Another positive side effect is weight loss upon using Ozempic, It was approved as a diabetes drug and the side effect has turned into a whole new usage for the drug. That weight loss would be an adverse effect if the diabetic patient is already thin and should not lose any more weight. Psychologically the term "side effect" carries lots less weight.

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@normahorn
Someone once mentioned here that seldom do people post positive feedback, and I agree. I’d bet for every response that isn’t how great something worked, there’s a few or who knows how many, of people that didn’t have problems. So I try to keep that in mind when reading the reviews.

My year of Evenity went smoothly. My bones are now ostopenic, except for right hip, which is on the line of osteopenia and osteoporosis. I got my Reclast infusion (was nervous about it because of all I’ve read on the site here, but trust my doc.) the reclast went smoothly. Before the Reclast, and the Evenity injection, the endocrinologist told me to take 1000 mg of tylenol, 1000 of Vitamin D, and an extra 1000 of calcium in the morning, and to do that for two days after, also.

We are all different and some more susceptible to side effects than others.

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Profile picture for willow5 @willow5

@normahorn
Someone once mentioned here that seldom do people post positive feedback, and I agree. I’d bet for every response that isn’t how great something worked, there’s a few or who knows how many, of people that didn’t have problems. So I try to keep that in mind when reading the reviews.

My year of Evenity went smoothly. My bones are now ostopenic, except for right hip, which is on the line of osteopenia and osteoporosis. I got my Reclast infusion (was nervous about it because of all I’ve read on the site here, but trust my doc.) the reclast went smoothly. Before the Reclast, and the Evenity injection, the endocrinologist told me to take 1000 mg of tylenol, 1000 of Vitamin D, and an extra 1000 of calcium in the morning, and to do that for two days after, also.

We are all different and some more susceptible to side effects than others.

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@willow5
Looking at shifting treatments…
What were your tscores before and after Evenity? And then now after reclast?

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Profile picture for kaybollinger79 @kaybollinger79

When I got my infusion in June it hit my muscles, especially my back my joints and wound up in emergency room. My hands swelled up like the Pillsberry puff boy. They had to cut my rings off. My doctor refuses to believe it was the reclast. Of course it all started the night. I took it with fever chills, swelling .
I am switching doctors.
It will be six months soon and I’m still having back pain knee pain and sometimes pain in my fingers and wrist. Nothing is as bad as it was. I did have acupuncture and I think it helped.
I have been reading things about the auto immune system that have changed since we had the Covid vaccine. Possibly this was a reaction because of Covid vaccine made my immune system go into overdrive. I felt like my body was attacking itself.
Just know that things to get better, but it’s very slow.

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@kaybollinger79 it has been 18 months for me since I had my infusion. The day after the infusion it was a 10! Arms, shoulders, left foot, stomach cramps, nausea feeling after consuming anything. In 18 months with physical therapy and visualization therapy I’m down to a 2 on a good day and maybe a 4 on a bad day. I know that sounds like a long time but one thing about retirement, the days seem to fly by! I feel the best advice is to try and stay positive, there are people out there a lot worse that I and when feeling a tad overwhelmed I try to sit calmly and visualize a quiet peaceful place and try to put both mind and body into this scene, helps relax!

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Researchers (from University of Leipzig, Germany and Shandong University, China) identified GPR133/ADGRD1 as a receptor that plays a central role in bone formation and maintenance. 
I’m wondering if anyone here in the forum has heard or read about this study ?

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