Reclast - Please share your positive experiences

Posted by jjpoodlespress @jjpoodlespress, Apr 12 12:59pm

Has anyone done well after doing the Reclast Infusion? I am due to do this before the end of April 2025 Kind of scared with hearing all bad side effects and need to hear good news with Reclast?

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@misst1970

I was terrified to have the infusion after reading some of the stories, but knew I had to do something to lock in my gains I'd made from Tymlos. i discussed with my concerns with my bone doc and scheduled it, he did note the vast majority have no lasting side effects beyond the first two weeks (I was terrified I would be in the small minority that do but knew I had to do something). He noted I am in good health and have no underlying conditions, he did do a full panel prior to determining if I was a good candidate (made sure kidney function was good, etc). I had my infusion on May 14. I hydrated very well the day before and day of (and for three days after as they recommended). I took tylenol just prior to the infusion, again that night and the next day. I felt fine evening of infusion, mild flu like symptoms the next day and then no issues since. I will have two more annual infusions then no drugs for several years with bone marker testing to determine when it's time for a next step.

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Love to hear this — i have my first infusion two weeks from today. I am staying in a positive mindset about it!! Thanks for sharing

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@misst1970

I was terrified to have the infusion after reading some of the stories, but knew I had to do something to lock in my gains I'd made from Tymlos. i discussed with my concerns with my bone doc and scheduled it, he did note the vast majority have no lasting side effects beyond the first two weeks (I was terrified I would be in the small minority that do but knew I had to do something). He noted I am in good health and have no underlying conditions, he did do a full panel prior to determining if I was a good candidate (made sure kidney function was good, etc). I had my infusion on May 14. I hydrated very well the day before and day of (and for three days after as they recommended). I took tylenol just prior to the infusion, again that night and the next day. I felt fine evening of infusion, mild flu like symptoms the next day and then no issues since. I will have two more annual infusions then no drugs for several years with bone marker testing to determine when it's time for a next step.

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Does your doctor anticipate needing more treatment after three years on Reclast? Thanks so much.

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I will go on a drug holiday while it remains in my system so 3-5 years of no drugs after Reclast. But I will need additional meds in the future to maintain my bone density. With no medications my bone density will decline, there is unfortunately no cure for osteoporosis, only treatments to stop or slow the bone loss (or in the case of the anabolic build the bone up). As I was diagnosed at 51 I will have many years on something. Luckily we have numerous options now, many of which didn’t even exist 20 years ago. None of the treatments are recommended for long term which is why having a doc that understands them, the order they should be taken and for how long is so important.

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@misst1970

I was terrified to have the infusion after reading some of the stories, but knew I had to do something to lock in my gains I'd made from Tymlos. i discussed with my concerns with my bone doc and scheduled it, he did note the vast majority have no lasting side effects beyond the first two weeks (I was terrified I would be in the small minority that do but knew I had to do something). He noted I am in good health and have no underlying conditions, he did do a full panel prior to determining if I was a good candidate (made sure kidney function was good, etc). I had my infusion on May 14. I hydrated very well the day before and day of (and for three days after as they recommended). I took tylenol just prior to the infusion, again that night and the next day. I felt fine evening of infusion, mild flu like symptoms the next day and then no issues since. I will have two more annual infusions then no drugs for several years with bone marker testing to determine when it's time for a next step.

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Thank you for sharing! It seems like if we hydrate well, take Tylenol, as directed, the infusion seems to go well. I was wondering if anybody did all the above preparation and still ended up having terrible reactions? I’m planning to do Reclast after my Evenity treatment in a couple months. This site is so helpful!

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@mmourton

I am 73 and I received my first infusion of Reclast on Mar. 24, 2025. I was tired and achy that night, which I had been told to expect but was fine the next morning. That evening while washing my face I noticed my left eye hurt slightly behind my eyeball. I had never had that feeling before. I did not connect the infusion with this as I had not been told this was a possible but rare side effect; nor had I read that in any of my research. The pain and swelling got worse over the next 3 days. The arthritis center where I had the infusion told me to go to emergency. It was Friday and I called my opthalmologist for an appointment for Mon. Over that weekend, it got much worse, so much so that I went to the emergency on Sunday. I told them that I thought it was from the infusion but the ER doctor decided it was an allergic reaction and prescribed me a antihistamine and a stomach pill, both of which I was already on if they had bothered to read my medications. When I went to the opthalmologist the following day, my left eye was completely swollen shut. I again told him I thought it was a side effect of the infusion. He didn't say it was or wasn't from the infusion but was concerned there might be something else going on, such as a tumor. He directed me to get a CAT scan the following morning. It did not show any mass. I was prescribed 40 mg. Prednisone for 7 days, Prednisolone AC 1% drops-1 drop 2x per day, sodium chloride eye ointment--3x day along with Pantoprazole 40 mg ( in case the steroid upset my stomach). After seeing another eye doctor at Cleveland Clinic, and taking every test for possible infection, they both conceded that my reaction was a response to the infusion. It is now almost 3 weeks out from the infusion and my vision is still adversely affected in the right eye. I have not yet had a follow up with the infusion doctor or the eye doctors, but the eye doctors that I previously saw recommended that I not continue the infusions. I do not plan to.

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I had Reclast over a year ago and have suffered horrible muscle and joint pain ever since! I did not think of it being caused by Reclast bur I too have been experiencing eye problems! I now have a basic cell carcinoma by my eyelid that I will be having surgery on next week. I also have some kind of itchy rash on my eyelids that I never had before. Reclast has caused so many health problems that I was never warned about. I went from being very active to now suffering just trying to get up from a chair! My husband was scheduled for Reclast and he cancelled after seeing how painful my reactions to it were. I also noted in the possible side effects "rapid weight gain" and I gained 9 pounds in 3 weeks after the infustion, and have gained another 11 pounds since that I have been unable to lose! Reclast has been a nightmare, I went from being a very healthy and active 83 year old to a very old 84!!

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@misst1970

I was terrified to have the infusion after reading some of the stories, but knew I had to do something to lock in my gains I'd made from Tymlos. i discussed with my concerns with my bone doc and scheduled it, he did note the vast majority have no lasting side effects beyond the first two weeks (I was terrified I would be in the small minority that do but knew I had to do something). He noted I am in good health and have no underlying conditions, he did do a full panel prior to determining if I was a good candidate (made sure kidney function was good, etc). I had my infusion on May 14. I hydrated very well the day before and day of (and for three days after as they recommended). I took tylenol just prior to the infusion, again that night and the next day. I felt fine evening of infusion, mild flu like symptoms the next day and then no issues since. I will have two more annual infusions then no drugs for several years with bone marker testing to determine when it's time for a next step.

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I'm exactly the same - was terrified to have the infusion, but knew I needed to lock in my gains from Tymlos (got back over the line to osteopenia!). Discussed with my doc who also didn't think I would have side effects. I had my infusion yesterday and no side effects 24 hours later! I went to work today and worked out this afternoon. I'm a little older than you - just turned 61 & was diagnosed at 58 (just before turning 59). I drink a lot of water normally, but made sure to drink extra. They gave me Tylenol just before the infusion, IV saline and then the Reclast over 45 minutes. Interestingly they only gave me 400 mg of Tylenol. I took 2 extra-strength Tylenol last night, 2 this morning & then again mid afternoon. I'll take it again tonight just in case. I've continued to drink extra water & will do so tomorrow also. My doctor said "1 or 2 Reclast infusions." I'd love to stick to 1 but I trust her so we'll see...

A friend I work out with has had 2 and she didn't have any side effects either time.

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