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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So do you ask your endocrinologist to ask why it did not keep your bone density? Or improve it?

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Is your endocrinologist at mayo clinic? Where are they at? Im looking fir another. Not happy with my endo.

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Profile picture for foxy23 @foxy23

Because I have DJD, stenosis and scoliosis L3,4,5; they use my forearm instead of my spine because of false readings. I can only imagine how bad my spine must be. Does anyone have info on another test just for the spine?

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@foxy23 yes if u have hardware u have to get to a facility that has a Quantitative CT i know mayo clinic Rochester mn and I'm sure Jacksonville fl has one to. I would imagine that is only found in large medical centers and hospitals. You would have to call around.good luck.

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Profile picture for windyshores @windyshores

@jeanniejacobs it is possible to have a low dose Reclast, but more frequently. For instance, 1mg vs 5mg, with IV hydration, slow infusion and tylenol. Then another dose of the patient's choosing, three months later. I have also read and doc confirms, that a 2.5 mg half dose is as effective as the full 5mg.

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@windyshores if your doctor will do it. Goid luck finding one who will.

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Profile picture for mackie42 @mackie42

Since I had my last Prolia shot six months ago and was due for one on Feb. 17, she said now was a perfect time to make the switch since six months have passed. She said to time it correctly, we should do the new Reclast infusion in the middle of March so I'm scheduled for March 13th.

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@mackie42 hi can u let us know how your reclast goes. Ierrified of long term side effects. I have no pain now after my back fusion and im not wanting any.

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Profile picture for windyshores @windyshores

I thought the standard time was 6 months after the last Prolia shot. And some providers, such as Keith McCormick, suggest using the CTX (and maybe the P1NP) blood test to make sure the timing is right. According to McCormick's book "Great Bones" you need active bone remodeling for Reclast to work. (One of my docs says to just do the Reclast at 6 months and no need to rely on CTX). Another resource is Dr. Ben Leder's video on youtube entitled "Combinations and Sequencing."

Too early and too late with the Reclast are both possibly a problem. Do you have an endocrinologist and did they suggest a timing?

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@windyshores I have endo not thrilled with her never said anything about timing but I also didn't know that u have to have remodeling to it to be successful. How do you know if you have this or not or how much should the CTX reading be?. Should he be doing P1n1 to or is that the remodeling one. I think he was going to do alternate p1n1 but i dont know what it was. Whi h one is what and which ones are the remodeling g one. ? Im coming off evenity in 3 months on jan 20 last shot. . Blood test is scheduled for feb 3. Is that too late to test for remodeling? This is confusing what to do or what they should do and they dont tell me anything. I dont like blindly trusting without knowing everything I can.

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Profile picture for findtheanswersdn @findtheanswersdn

@normahorn hi i do not believe that chocolate m8lk will be hydrating enough to protect your kidneys
This is a pretty powerful drug. I would be drinking lots of water daily before and after for 2 to 3 weeks to BE SAFE THAN SORRY . IM SUPPOSED TO GET THIS IN FEB. I rethinking because of powerful effects and risk of jaw discintigratimg and femur fracture risks and long term bone joint severe that does not go away. I do not have any pain after my fusion now nor do I want any pain. Be well. Be safer than sorry. MY mom's advice she is in heaven now I have never forgot her words. Unfirumtunately with low bone and all these shitty drugs there is no such think as safe.

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@findtheanswersdn
I am firm believer in going with what works for one. Since I can only sip at water but can drink chocolate milk eagerly, I would choose milk. Also, this is some controversy over whether water is better than milk for hydration. Studies are not definitive either way.

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Yes I have had three
1. No problem
2. Bones ached for 2 days
3. Doc said take Tylenol before and after and I was ok.

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Profile picture for lkf109 @lkf109

I received an infusion at the end of January. Approximately 1 1/2 months later I started having pain in both arms, including wrists and hands. I think my back pain was exacerbated too. The pain can be extremely uncomfortable and Tylenol doesn't help. I can't take NSAIDS because I have one and a half kidney anda they affect the kidney. It's very frustrating. I feel your pain. This was never explained to me by the physician who prescribed it. He just told me about the fllu-like symptoms that may occur within four days of receiving it. I had none of that. Ugh!

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@lkf109
I agree. Doctors only talk about the immediate side effects. I started hurting 1-2 months after infusion as well. My bones hurt in writs, back, hips, and feet, i was very tired after doing a little housework, depressed and just plain didn’t feel good. I tried to lift weights and do my strength program and just couldn’t work out well. My muscles felt weak. This lasted for one year. I slowly started feeling better and it was time for my 2nd infusion. That was August and i haven’t had one yet. I wish insurance paid for a dexa scan to see if the 1st infusion changed my bones.
I am continuing to do weight training and eat well. The thought of having another year of feeling sick and tired doesn’t appeal to me.

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Profile picture for findtheanswersdn @findtheanswersdn

@mackie42 hi can u let us know how your reclast goes. Ierrified of long term side effects. I have no pain now after my back fusion and im not wanting any.

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@findtheanswersdn
Of course everyone is different but I've had two Reclast infusions and had no side effects. After the first infusion I was a little tired for a day. I had no side effects whatsoever after the second one. I do have to have a dental implant and I'm scheduled for an extraction this week. I had the second infusion last March and I purposely waited 8 months before scheduling the extraction because of concerns of necrosis of the jaw which can occur (rarely) if on Reclast.

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