1. < Osteoporosis & Bone Health
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Are you taking Reclast for osteoporosis?

Posted by Becky, Volunteer Mentor @becsbuddy, Jul 21, 2020

Two years ago I was diagnosed with pretty bad osteoporosis because of the prednisone I was on for my autoimmune disease. I started taking Fosamax (a bisphosphonate) and had no problems. Today, the endocrinologist suggested that I switch to Reclast for 3 yearly infusions. Has anyone else taken this drug? What side effects have you had?
Thanks

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merle725 | @merle725 | Apr 25, 2023

Hi Chris,
I fell because of the ice hidden beneath snow. As I placed my foot on the curb, it slid onto the parking lot and I fell forward. I'm 79 and realize balance is an issue, but so far so good. Thanks for the suggestion. I said I believe Tymlos is the reason, because they state it as one of the side effects! I googled it. No one can determine it positively, but I haven't had one since I stopped either. Everyone has different reactions to all these treatments. I don't usually get side effects from meds. Now I am having this side effect of leg pain from Reclast. Maybe it has to do with age. I don't know. I just finished Evenity, and my Dexa scan showed that my bone density has gotten worse. My doctor said the fall was a perfect stress test and since I didn't break any bones, I should not worry so much.
I have 2 hip replacements so they cannot use my hips for Dexa. Perhaps that has something to do with my terrible score. -4.9 From now on, I plan to eat right, exercise regularly and specifically for osteoporosis, take vitamins, and hope for the best. I am not a fan of these meds. they say if you do Prolia it's hard to stop. I have a new endocrinologist who answers all my questions and explains things, so he might change my mind. there is another machine that measures the structure of your bones. I hope to be able to get that done one day.
Thanks for your good wishes. I hope your treatments are more successful than they were for me.
Merle

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1 reply
merle725 | @merle725 | Apr 25, 2023
In reply to @windyshores "Sorry meant kidney disease. (My mother had kidney failure and I slipped, since it was still..." + (show)
@windyshores

Sorry meant kidney disease. (My mother had kidney failure and I slipped, since it was still in my mind!)

Tymlos helped me tremendously.

This has nothing to do with kidney stones, or with Tymlos.

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Oh good. Kidney failure is scary! I'm glad Tymlos helped you and wish you continued success. As you know, everyone's body is different, so their reactions can be different. I usually do not get side effects. Perhaps it's my age since our bodies change as you age...

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windyshores | @windyshores | Apr 25, 2023

I ran into a friend today who has just left her Reclast infusion and she was perky and animated and absolutely fine. Everyone sure is different.

Kidney stones are a side effect of Tymlos. That is one reason I take 800mg calcium instead of the recommended 1200mg! But some people will get a stone no matter what they do and sorry that was you!

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maryanncascella | @maryanncascella | Apr 30, 2023
In reply to @contentandwell "@colleenyoung and others, I am still not on anything. This is such a difficult decision. I..." + (show)
@contentandwell

@colleenyoung and others,
I am still not on anything. This is such a difficult decision. I have a new DEXA scheduled in October and appointments with the endocrinologist that I went to last year who recommended Reclast and am also trying to make an appointment with the endocrinologist I see for diabetes and hypothyroidism so I can get a second opinion. Both of them are very highly regarded. I am having so much trouble making that appointment though that I'm getting paranoid!

As it is I am exercising, doing weight-bearing exercises along with others, (balance, core, cardio), taking calcium, vitamins D and K. I am scared to death about the medications though. I have a history of having problems with medications. I had to be changed from tacrolimus, the 1st medicine of choice for liver transplant patients, to sirolimus due to problems. When I was on a BP medication a number of years ago I had problems and had to be switched, and recently I had to discontinue a cholesterol medication due to problems. You probably think that it's all in my mind, but actually I never read the side-effects! I went to my doctor for constant cough after she put me on lisinopril and she immediately knew that was the cause, and I was having terrible pains in my legs and a friend asked me if I was on a cholesterol drug, which I was! Who would think that a BP med could cause a cough and that a cholesterol med could cause muscle pains? I also have had problems with some PPIs and with a medication that I was given prior to transplant that that made me sick for two days. So, you can see my reluctance to start on a medication with such serious, well-known side-effects. I still do not know what I will do, I need to do a lot more research before I made a decision but I don't retain medical info well so I want to do it a bit closer to my appointments.

I am trying to follow these discussions to gain as much knowledge as possible to help me with this decision. Right now I am favoring Tymlos for starters.
JK

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I'm in the same boat. Forteo caused my hands and feet to swell up to the point where I ended up in the doctor's office. My tolerance for some medications is poor, so I've decided to forego the Reclast infusions for now. Having seen a 10% increase in my Dexascan this time around tells me that the Evenity worked. Following up with something is necessary so I don't lose what I've gained, but the side effects for someone like me who has G.I. issues are a deal breaker. BTW - lisinopril also makes me cough!

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1 reply
windyshores | @windyshores | Apr 30, 2023
In reply to @maryanncascella "I'm in the same boat. Forteo caused my hands and feet to swell up to the..." + (show)
@maryanncascella

I'm in the same boat. Forteo caused my hands and feet to swell up to the point where I ended up in the doctor's office. My tolerance for some medications is poor, so I've decided to forego the Reclast infusions for now. Having seen a 10% increase in my Dexascan this time around tells me that the Evenity worked. Following up with something is necessary so I don't lose what I've gained, but the side effects for someone like me who has G.I. issues are a deal breaker. BTW - lisinopril also makes me cough!

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@maryanncascella My doc is doing a "test dose" of Reclast with 1 mg instead of the full 5mg. He told me to hydrate well and I will have a slow infusion. He wants me to report side effects and tolerability. This small dose will last 3 months and I can determine the size of the next dose, myself.

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2 replies
maryanncascella | @maryanncascella | May 1, 2023
In reply to @windyshores "@maryanncascella My doc is doing a "test dose" of Reclast with 1 mg instead of the..." + (show)
@windyshores

@maryanncascella My doc is doing a "test dose" of Reclast with 1 mg instead of the full 5mg. He told me to hydrate well and I will have a slow infusion. He wants me to report side effects and tolerability. This small dose will last 3 months and I can determine the size of the next dose, myself.

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Wow. That sounds like a great strategy. My doc never mentioned that, but I also didn't ask enough of the "tough" questions. I will be getting a second opinion next month with another person to explore my options. Please update this post with your progress. Good luck!

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ripley | @ripley | May 25, 2023
In reply to @ljgraham166 "Had a terrible reaction to Reclast never again. Had to take prednisone for a week" + (show)
@ljgraham166

Had a terrible reaction to Reclast never again. Had to take prednisone for a week

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Can you offer more info on your reaction? My endo Dr recommends Reclast and I am afraid to take it. Thanks.

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pmcgrady626 | @pmcgrady626 | May 26, 2023

I did yearly reclast infusions. I am osteopenia. I had no side effects but saw no improvement. Just stayed the same. About 6 months ago I had a pelvic fracture. No fall. Just stood up and took a step forward and the pain hit. I changed to a regemin of vitamins and exercise, on my own. Too soon to know if I did the right thing.

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2 replies
windyshores | @windyshores | May 26, 2023
In reply to @pmcgrady626 "I did yearly reclast infusions. I am osteopenia. I had no side effects but saw no..." + (show)
@pmcgrady626

I did yearly reclast infusions. I am osteopenia. I had no side effects but saw no improvement. Just stayed the same. About 6 months ago I had a pelvic fracture. No fall. Just stood up and took a step forward and the pain hit. I changed to a regemin of vitamins and exercise, on my own. Too soon to know if I did the right thing.

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@pmcgrady626 for how many years did you do the Reclast infusions? That info would be helpful to me and others! So sorry for your fracture and hope you are feeling better.

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