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Does anyone have a solution to help manage Reclast side effects?

Posted by dingus @dingus, Aug 15, 2024

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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debafitz | @debafitz | 4 days ago
In reply to @harborside24 "@debafitz I just received my second Reclast infusion, and so far so good. I did very..." + (show)
Profile picture for harborside24 @harborside24

@debafitz I just received my second Reclast infusion, and so far so good. I did very well last year after the first and attribute that to this website and the suggestions made here, as well as the info from my endocrinologist. I began hydrating well a few days before the infusion, day of, and a couple days after. I also started 650 mg of Tylenol after each meal a couple days before, day of, and the day after. In addition I took a Claritin the day before, day of, and day after. All of these help to minimize the chance of an acute phase reaction. The only "strange" thing I had happen within this past year is acute lower back and thigh pain out of the blue in May...10 months after the first infusion. It required steroids, muscle relaxants, and pain meds for 5 days. We still aren't sure if that was possibly a delayed reaction to the infusion. I may have over done it working with weights but honestly can't remember. It will be interesting to see if I experience anything like that again. I cannot take Forteo or Tymlos, and the endo won't suggest Prolia because my sister had a terrible reaction to it. So Reclast is it for me unless some new promising drug surfaces.

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@harborside24 thanks for responding. So you didn’t have flu like symptoms? How many infusions are they suggesting? Mine, 3-5

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gravity3 | @gravity3 | 4 days ago
In reply to @gravity3 "@debafitz May I ask how old you are?" + (show)
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@debafitz

May I ask how old you are?

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@gravity3

Good description from harborside24 of the last prep. I would add that you can also ask your doc to instruct the folks doing your infusion to have it done more slowly. Remember that on sites like these it is more unusual to have people report their positive experiences with these drugs.

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gently | @gently | 4 days ago

debafitz, there are patients who have no side effects with Reclast, many have joint aches, and then there are the uncounted with long term (years) like danny who are told it wasn't caused by the medication.
If you have autoimmune disease, you might (it appears to me) have a more difficult time. And you might want to look at other medications.
If you have decided to take Reclast, ask your prescribing physician to message the clinic for a slower infusion. Novartis recommends 15 minutes. The dr who ran the final clinical trials recommends an hour to protect your kidneys and reduce the negative side effects.
I've read that you lose bone gained by Evenity quickly--within one year. I've read patient reports here on connect of individuals maintaining gain with Tymlos.
I hope you have good luck.

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harborside24 | @harborside24 | 4 days ago
In reply to @gravity3 "@gravity3 Good description from harborside24 of the last prep. I would add that you can also..." + (show)
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@gravity3

Good description from harborside24 of the last prep. I would add that you can also ask your doc to instruct the folks doing your infusion to have it done more slowly. Remember that on sites like these it is more unusual to have people report their positive experiences with these drugs.

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@gravity3 Thank you, I agree. I had them do 45 minutes. They had no issue with that. It was originally scheduled for 30.

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harborside24 | @harborside24 | 4 days ago
In reply to @debafitz "@harborside24 thanks for responding. So you didn’t have flu like symptoms? How many infusions are they..." + (show)
Profile picture for debafitz @debafitz

@harborside24 thanks for responding. So you didn’t have flu like symptoms? How many infusions are they suggesting? Mine, 3-5

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@debafitz No, I did not have any flu like symptoms. (I had an entire response typed but must not have hit reply.) The goal is to have one more infusion next year, and then hopefully I won't need any more. I wish they would give smaller "maintenance" doses after the initial 3. I wouldn't mind doing that once a year, if they thought it would help me.

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prarysky | @prarysky | 4 days ago
In reply to @harborside24 "@debafitz I just received my second Reclast infusion, and so far so good. I did very..." + (show)
Profile picture for harborside24 @harborside24

@debafitz I just received my second Reclast infusion, and so far so good. I did very well last year after the first and attribute that to this website and the suggestions made here, as well as the info from my endocrinologist. I began hydrating well a few days before the infusion, day of, and a couple days after. I also started 650 mg of Tylenol after each meal a couple days before, day of, and the day after. In addition I took a Claritin the day before, day of, and day after. All of these help to minimize the chance of an acute phase reaction. The only "strange" thing I had happen within this past year is acute lower back and thigh pain out of the blue in May...10 months after the first infusion. It required steroids, muscle relaxants, and pain meds for 5 days. We still aren't sure if that was possibly a delayed reaction to the infusion. I may have over done it working with weights but honestly can't remember. It will be interesting to see if I experience anything like that again. I cannot take Forteo or Tymlos, and the endo won't suggest Prolia because my sister had a terrible reaction to it. So Reclast is it for me unless some new promising drug surfaces.

Jump to this post

Hope your second infusion goes as well as your first and that the back and thigh pain was not a delayed reaction to the first. That would really be another monkey-wrench thrown into the unpredictability of our reactions to these infusions.

When you're feeling up to it, please let us know how you're doing after your second infusion. Fingers crossed that your back & thigh pain has been resolved or is much better. It's amazing how often pain which seems out of nowhere can occur! I assume your Reclast prescribing doc knows about your back & thigh pain so s/he can at least be aware this happened and keep mental inventory of this in case other patients report it.

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harborside24 | @harborside24 | 4 days ago

My second infusion went well, thank you. I have had no reactions thus far. I'm at 60 hours post infusion right now and feel fine. The back and thigh pain I had a few months ago resolved by June (it happened in mid May). It remains to be seen if it was related to the infusion...I am hoping it was not. Yes, my doctor knows about what happened to me in May and is keeping a close eye on any reactions I might have. He thought about postponing the second infusion, but I wanted to proceed. I hated the thought of losing a dose when we weren't even sure if the pain I had was related. It was a chance I was willing to take.

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weissl | @weissl | 4 days ago
In reply to @debafitz "I’m about to start first reclast in about a mo. I just stopped Evenity for 12..." + (show)
Profile picture for debafitz @debafitz

I’m about to start first reclast in about a mo. I just stopped Evenity for 12 mo. After reading most posts on here it has me very nervous to take. Has anyone had a good experience? I was told if I don’t continue treatment I will lose all that was gained this past year. I can’t take oral pills. Please help!!!!

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@debafitz Please don’t take Reclast! It ruined my life!

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jcl75 | @jcl75 | 3 days ago
In reply to @dannyandebbie "@carolgrandma I see that you expressed, “ first of three”. It is my suggestion that you..." + (show)
Profile picture for dannyandebbie @dannyandebbie

@carolgrandma I see that you expressed, “ first of three”. It is my suggestion that you decline any additional Reclast infusions unless your endocrinologist can provide you with the answer you seek! I am a 69 year old male who received his first and last infusion two plus years ago. Much like you, I was quite physical and had your normal aches and pains. After the infusion I too had flu like symptoms at first and after about a week, bang ‼️ shoulders, left foot, vision, lower back, hips, weak muscles and nausea to mention just a few. My Endocrinologist said, “ this is not from the infusion “ and suggested I see a rheumatologist, who suggested I see a Neurologist who suggested I see my Endocrinologist. No one can explain my symptoms! I’ve been going to physical therapy bi-weekly since my infusion. Three suggestions! Look up Reclast infusion and potential side effects, contact FDA to report your symptoms and take care of yourself! I apologize for not having better answers and should you find a solution I would truly appreciate your feed back!

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@dannyandebbie @carolgrandma

I too had a serious reaction to an infusion that started 3-4 days after. The medication was Reclast for osteopenia. I was hospitalized and diagnosed with Giant Cell Arteritis wth
permanent partial vision loss in one eye. There are recent studies looking into the connection between GCA and Reclast. I did report this to the FDA

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