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

Posted by kay15 @kay15, May 22, 2025

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.

Profile picture for kay15 @kay15

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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@kay15 - STOP!!! Reclast will never be able to get your left femoral neck below -2.5. The most Reclast can move the hip / neck area is about 0.3 T-Score (for you, -3.2 down to maybe -2.9). Convince your doctor to put you on Evenity instead. It works the best in the hip. It still wont get you below -2.5, but whatever you take after that should be able to do the trick.

If you go on Reclast now, Evenity's effectiveness will be reduced. Better to use Evenity first, then Reclast or some other anti-resorptive (like Prolia) second.

I put together a presentation discussing this and you can find it here https://youtu.be/OVRiiyHXeh8 . There is a Reclast slide in the backup that you can show your doctor that shows you can only get about 4.3% BMD gain in the hip / neck area which equates to about 0.2 to 0.3 T-Score.

And don't be afraid of fracture, your numbers are not that bad at all, especially at your age. Just don't fall on your left hip and you will be fine. 🙂

Good luck!!!

REPLY
Profile picture for kay15 @kay15

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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RECLAST IS POISON!!!! I had 1 infusion, 12 hours later I passed out. No warning, no symptoms, nothing. When I came to, I was so sick for few days. Dr said NOMORE infusions. I’m done!

REPLY
Profile picture for Michael Lavacot @michaellavacot

@kay15 - STOP!!! Reclast will never be able to get your left femoral neck below -2.5. The most Reclast can move the hip / neck area is about 0.3 T-Score (for you, -3.2 down to maybe -2.9). Convince your doctor to put you on Evenity instead. It works the best in the hip. It still wont get you below -2.5, but whatever you take after that should be able to do the trick.

If you go on Reclast now, Evenity's effectiveness will be reduced. Better to use Evenity first, then Reclast or some other anti-resorptive (like Prolia) second.

I put together a presentation discussing this and you can find it here https://youtu.be/OVRiiyHXeh8 . There is a Reclast slide in the backup that you can show your doctor that shows you can only get about 4.3% BMD gain in the hip / neck area which equates to about 0.2 to 0.3 T-Score.

And don't be afraid of fracture, your numbers are not that bad at all, especially at your age. Just don't fall on your left hip and you will be fine. 🙂

Good luck!!!

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Hi Michael, I actually spoke to my doctor after I saw your message. He dint really care what I said but he did agree to switch me to Evenity since I been hesitant on doing Reclast. He approved the change and I'm not waiting for approval on my insurance to start the monthly injections. I'm still wondering if I'm doing th right thing but I prefer starting with the monthly injections and if that doesn't work for me then moving to the once a year option, you message was just the push I needed to change my mind. Thanks!

REPLY
Profile picture for kay15 @kay15

Hi Michael, I actually spoke to my doctor after I saw your message. He dint really care what I said but he did agree to switch me to Evenity since I been hesitant on doing Reclast. He approved the change and I'm not waiting for approval on my insurance to start the monthly injections. I'm still wondering if I'm doing th right thing but I prefer starting with the monthly injections and if that doesn't work for me then moving to the once a year option, you message was just the push I needed to change my mind. Thanks!

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Hi there, at your young age have you considered Tymlos or forteo first? They are bone building meds and many on here have had nice gains. It is best to use them first to build bone, then go on an anti resorption med to lock in gains. Eventity starts out as bone building then becomes anti resorptive. Some on this forum start with forteo or Tymlos, then move to eventity. Just a thought to consider. I am in my early 50's and that is my plan. Wishing you the best of health!

REPLY
Profile picture for kay15 @kay15

Hi Michael, I actually spoke to my doctor after I saw your message. He dint really care what I said but he did agree to switch me to Evenity since I been hesitant on doing Reclast. He approved the change and I'm not waiting for approval on my insurance to start the monthly injections. I'm still wondering if I'm doing th right thing but I prefer starting with the monthly injections and if that doesn't work for me then moving to the once a year option, you message was just the push I needed to change my mind. Thanks!

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You are, he gave you good information to build bone in the hip, your worst score. You're lucky, in that, with most in here, our numbers are much worse. Good luck.

REPLY
Profile picture for kay15 @kay15

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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I have been on Reclast 14 years. My Dr retired, got a new one, who said no more annual injections! I should’ve only been on it 3 years or 5 years if something was terribly wrong with me. What will happen now to me that it’s stopped? I’m 71 years old and in very good health otherwise.

REPLY
Profile picture for Michael Lavacot @michaellavacot

@kay15 - STOP!!! Reclast will never be able to get your left femoral neck below -2.5. The most Reclast can move the hip / neck area is about 0.3 T-Score (for you, -3.2 down to maybe -2.9). Convince your doctor to put you on Evenity instead. It works the best in the hip. It still wont get you below -2.5, but whatever you take after that should be able to do the trick.

If you go on Reclast now, Evenity's effectiveness will be reduced. Better to use Evenity first, then Reclast or some other anti-resorptive (like Prolia) second.

I put together a presentation discussing this and you can find it here https://youtu.be/OVRiiyHXeh8 . There is a Reclast slide in the backup that you can show your doctor that shows you can only get about 4.3% BMD gain in the hip / neck area which equates to about 0.2 to 0.3 T-Score.

And don't be afraid of fracture, your numbers are not that bad at all, especially at your age. Just don't fall on your left hip and you will be fine. 🙂

Good luck!!!

Jump to this post

I’m with you she doesn’t at her age need much. I wish i had her scores at my age of 72. Sometimes I think they are jumping a little too early and doing damage that can be helped by diet and exercise.

REPLY

@kay15, I combined your two discussions on gathering information about Reclast and other osteoporosis medications for discussion with your doctor into one discussion titled:

"Medications: How to make the best choice for me with my doctor?"
- https://connect.mayoclinic.org/discussion/reclast-comments/

It's normal to be worried about starting medication for a new condition. Your age and medical history will be factors to consider in your choice along with your doctor.

It can be helpful to gather information from fellow patients, but everyone is different. Your doctor knows your complete medical history. We don't. Everyone is different and no one here can tell you what you should do. It's also important to note that Experiences and information shared by members on the Mayo Clinic Connect are not a substitute for professional medical advice, diagnosis or treatment. Never disregard professional medical advice or delay in seeking it because of something you have read on the community.

You were wise to discuss further with your doctor so that you can have confidence in the choices you make together. Has your doctor referred you to an endocrinologist? Do you feel a second opinion would be helpful?

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I've been on Reclast for 5 years..No side effects or problems. Be sure to be well hydrated before and after your infusions.

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Profile picture for hollygs @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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Hi.. I’m thinking of doing Fosamax.. how did you do on that? Any bad reactions? I did a Zometa infusion, had terrible side effects with intense muscle spasms. Looking for another solution!

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