Medications: How to make the best choice for me with my doctor?

Posted by kay15 @kay15, May 22 2:22pm

Hi guys! It's been a month of testing, and my doctor decided to use Reclast infusions. It seems I might have Celiac (colonoscopy here I come) and my varmint D is in the low 18s so absorption might be my issue. I AM scared s*itless by reading the comments but I decided to move forward with it because every medication I read about has horrible side effects, so I might as well try this one.im tired of living in fear of breaking a hip, I'd like to take a shower without gripping the handle for dear life. With that being said I want advise. The good, the bad, what work for you? What questions should I ask? What did you buy that improved your life on it? What do you regret not doing/saying before it? And if you had no issues PLEASE tell me, I can use any positive stories to settle my mind.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

I would advise that you know if you have any symptoms of chronic kidney disease. I was at stage 2-3 in Chronic Kidney Disease and Reclast put me in a 3b stage. I've been following a kidney diet ever since.

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Please! Look up Reclast and its potential side effects before you receive the infusion……once you receive the infusion, you cannot just take it out and be back to “normal” whatever that might be! If I had the opportunity, I would have never received the infusion. I know as well as you know, as we age we are all prone to fractures of some sort; especially hips. Until my Endocrinologist is willing to accept and agree that Reclast can and does apply certain symptoms that are very uncomfortable and can last long time!
Exercise, movement can assist in keeping your bones stronger! So, I’m told!

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I guess I am one of the lucky ones. I have had 3 infusions and have had no side effects. I drank lots of water the day before and day of the infusion. Also took a Tylenol before the appointment. I had a one hour infusion....took a book with me and caught up on my reading. Good luck!

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I was terrified reading all the stories as well but knew doing nothing wasn't an option for me. After Tymlos, my bone doc recommended the Reclast infusion to lock in my gains. I debated, fretted, etc but eventually decided to just go for it on his advice. I had my infusion on May 14. I made sure I was VERY well hydrated (started the day prior - so much water!), took tylenol just before the infusion, again that evening. I took tylenol the next day as well. I continued to hydrate very well for the three days post infusion as that was recommended as well. Day after the infusion I had some fairly mild flu-like symptoms and a headache. Day 2 felt pretty good and I've had no issues since. I had talked to my doc about the possibility of long lasting symptoms, he didn't dismiss it but did note that the vast majority simply have the flu like symptoms and possibly mild bone pain in the first two weeks (most for a day or two), and then are fine. I had all the testing done prior to make certain I was a good candidate for it and that my kidney's, etc were in a good position for it (if you have kidney issues Reclast is NOT recommended - my mom's doc won't consider it for her as she has kidney disease). I will have two more annual infusions then go off drugs for several years having bone markers tested to determine when it's wearing off and I need to start the next step. Good luck with your infusion!

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Misst1970,

I’ve had more than my share of Reclast infusions (7+) over a period of about 15 years - the med was fairly new at the time of #1.

Make sure to hydrate - I drink a bottle of water during the infusion. Ask your doc to order a slow, at least 45 minute, treatment, and make sure the infusion nurse sees that directive. I also eat a little snack (pretzels) while I relax.

Best to you!! Cheers!

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Hi
I have done reclast Once a year for the last three years. The thing the pharmacist told me that was the most helpful was to Hydrate the day before. So I drink coconut water not just water or roar it's a good sugar free electrolyte drink. The morning of infusion I take 2 tylenol and drink an electrolyte drink during my infusion. The only side effects I had was just feeling a bit fluish that evening . I also drink water throughout the day After the infusion. Good luck

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I had my first Reclast infusion May 12, 2025. I hydrated the day before, the day of and the day after the infusion. I've had no side effects whatsoever. My infusion nurse told me that they have only had patients report mild flu-like symptoms and no other side-effects in the three years she's been administering Reclast. I know that some people do experience side effects, but it's been in use for 18 years and has extensive data. I find that reassuring.
Aside from hydrating to protect your kidneys, I would say that a trip to the dentist is a good idea. You probably already know that you can't have invasive dental work for a minimum of one year after Reclast.
Staying positive is a choice I've embraced as living in fear is stressful and unhealthy. I've done that already and I refuse to go back! So far I've done Fosamax, Evenity, Tymlos and Reclast. Best wishes to you!

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@hollygs

I had my first Reclast infusion May 12, 2025. I hydrated the day before, the day of and the day after the infusion. I've had no side effects whatsoever. My infusion nurse told me that they have only had patients report mild flu-like symptoms and no other side-effects in the three years she's been administering Reclast. I know that some people do experience side effects, but it's been in use for 18 years and has extensive data. I find that reassuring.
Aside from hydrating to protect your kidneys, I would say that a trip to the dentist is a good idea. You probably already know that you can't have invasive dental work for a minimum of one year after Reclast.
Staying positive is a choice I've embraced as living in fear is stressful and unhealthy. I've done that already and I refuse to go back! So far I've done Fosamax, Evenity, Tymlos and Reclast. Best wishes to you!

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Good Afternoon,
Thank you so much for all your inputs! And your right it's so stressful just not doing anything so I'll make sure I stay hydrated and positive , only thing I can do.

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After 1 infusion my right knee looked like a large jam and was in much pain. Everything went back to normal after a few days and my Dr switched me to Prolia. Now my hair is falling out! I HATE these drugs. You and everyone else suffering with these drugs will be in my prayers’

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Hello Everyone,

I am 32 years old and have osteoporosis due to my depo shots (15+years). I was diagnosed in October of 2024 and it took SEVERAL months to get a rheumatologist to see me. After speaking to them and having SO MANY tests done we believe Reclast is the best option. I will not lie , I am scared, I am so scared of doing this but after months of waiting I decided I want to do the drugs. I been using this super helpful group to prep. I called the infusion center and asked for a saline drip and a slow infusion because some people advised it helped (cleared with my doctor). I have my 500mg of Tylenol ready to take before and after the infusion (clear with doctor) I also picked up coconut water and I will make sure to drink tons of water before hand. I am scared because of the pain some people get but I am in pain right now, my TMJ hurts my face, my Endometriosis is back now that I'm off the Depo and the pain is as bad as I remember. My joints hurt when I move and I can't walk without pain in my lower back. My mental health is also taking a dive, i have so much fear that I'm going to break something. I can't hug my family without the fear that if they squeeze too tight I'll break. I can't go on a walk with my dog because I'm afraid I'll fall. So I hope this treatment helps because I want my old life back. I hope to report back with what helped, what dint help and hopefully some good news.
For anyone wondering here are my scores.
T score: -1.7. L1-L4.
Z score: -1.7.
FEMORAL NECK LEFT
T-score: -3.2.
Z score: -2.1.
FEMORAL NECK RIGHT
T-score: -2.4.
Z score: -2.3.
TOTAL HIP LEFT
T score: -1.8.
Z score: -1.8.
TOTAL HIP RIGHT
T score: -1.6.
Z score: -1.6

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