Actonel: Anyone have input or experiences?

Posted by detc @detc, Sep 22, 2022

I’m about to start taking Actonel for osteoporosis. Does anyone have input regarding taking it weekly vs monthly? Do you know if one is tolerated better than the other? Thank you.

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@colleenyoung

@omer, I moved your question about Actonel to this existing discussion:
- Actonel: Anyone have input or experiences? https://connect.mayoclinic.org/discussion/actonel-1/

I did this so you can read posts and expereinces of @detc @me49 @kolika @marcd @lnl and connect with them.

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Thank you.

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@lnl

I took Actonel for over a year. I had mixed results with it-- some numbers improved; one went the wrong direction. I am now on Tymlos-- one month in.
The only side effect I had with Actonel was constipation-- which, if you've never dealt with it seriously impacts quality of life.

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Thank you for this information. I am struggling with taking anything at all. I am afraid of the side effects. My lowest number is in my femur which is-2.3 as of last September but my CTX is getting higher. It’s now 705. I think the hormone blocker I am on is part of the problem. I get off the anastrozole in 8 months. I was hoping to ride it out until then.

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@omer

Thank you for this information. I am struggling with taking anything at all. I am afraid of the side effects. My lowest number is in my femur which is-2.3 as of last September but my CTX is getting higher. It’s now 705. I think the hormone blocker I am on is part of the problem. I get off the anastrozole in 8 months. I was hoping to ride it out until then.

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It's the side-effects issue that terrifies everyone. What is so interesting/troubling, though, is that a drug and dosage that sends one person to the ER is perfectly tolerated by another who reports they didn't feel a thing. You just have to find the one with the cost-benefit analysis that works for you. If you hate the Actonel pill, you can just stop. That's the nice part about pills. It's the infusions that still scare me-- and that's what comes at the end of Tymlos. So, even though I've done my time with Actonel, I'm still right there with you regarding fear of the unknown.

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I sometimes have swallowing issues with this med. Instead of being able to down all the water immediately, it might take up to five minutes of slow sipping between burping. Is there any kind of problem with taking a few minutes to drink the necessary water? Any tricks to not having this happen?

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@dramagal27

I sometimes have swallowing issues with this med. Instead of being able to down all the water immediately, it might take up to five minutes of slow sipping between burping. Is there any kind of problem with taking a few minutes to drink the necessary water? Any tricks to not having this happen?

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Hi dramagal27! My wife will soon start on a bisphosphonate. She sips water, too. I was concerned about the Actonel harming her esophagus when she drinks water this way. So I asked her doctor to prescribe Atelvia - same active med as Actonel, but is a once-a-week delayed-release coated tablet that is to be taken immediately after breakfast(!) with water. I'm thinking (and hoping) that the outer coating will get the tablet into her stomach without any esophagus problems. Another member of this group says she takes Atelvia "after having 'solid but spongy food' like pancakes, rather than something like hot or cold cereal or toast and eggs. I find pancakes provide a great cushion for the pill." She also eats some plantains. Afterwards, she drinks 2 glasses of water. Everyone is different, but in her case, a small breakfast and less water resulted in stomach pain. But her current regimen, she said, gives her no problems at all.
I'm going to try to have my wife follow this plan - hope she has similar results.
So is taking Actonel with sips of water causing any problems with your esophagus? How long have you been taking this med? And is it causing you any noteworthy side effects?
Sorry for the novel-sized comment, and wishing you good health!

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Hi there. I have come to realize that any swallowing issues I had appear to be related to allergy issues, excess phlegm in my throat, and some anxiety, so I try to clear out the phlegm before taking the pill. I took Actonel once weekly for 5 years, but I am now on a drug holiday. Btw: I have recently learned that these meds do not reverse the osteopenia/osteoperosis, but instead halt it. We can take drug holidays because the active ingredient remains in our bones for a long time. As for side effects - I didn't have any. In the past, when doctors kept you on these pills for years and years, eventually, people would have issues with bone pain/soreness, but the rules around it have changed and continue to change with updated information. Incidentally, I was initially advised to take it because I had broken two bones in my arm (proximal and distal humerus) within five years. Breaking any bone takes a while to recover. and I didn't want to go through that again.

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