For the Women: Anybody have an infusion for Osteoporisis?

[bushdianee]

Backstory, I had a complete hysterectomy almost 40 years ago at the age of 21 due to ovarian cancer. As a result my body has been without estrogen that long. I finally had a bone density scan done in 2015 after I broke my femur which showed osteoporisis. I was put on a weekly pill. I had another scan about 2 months ago that showed a decrease in density rather than being stable or increasing. Tomorrow I have to go to the hospital for an infusion. The only thing I've been told is that it will take a couple of hours and I may experience flu like symptoms for a few days. I am a little nervous. Thanks for any advice or information you can give.

 

[Mainsail Minnie]

Backstory, I had a complete hysterectomy almost 40 years ago at the age of 21 due to ovarian cancer. As a result my body has been without estrogen that long. I finally had a bone density scan done in 2015 after I broke my femur which showed osteoporisis. I was put on a weekly pill. I had another scan about 2 months ago that showed a decrease in density rather than being stable or increasing. Tomorrow I have to go to the hospital for an infusion. The only thing I've been told is that it will take a couple of hours and I may experience flu like symptoms for a few days. I am a little nervous. Thanks for any advice or information you can give.

I'm sorry for what you're going through.

What pill were you on, and what are they going to infuse into you?

Estrogen is best absorbed transdermally via a patch. You should get bioidentical hormones: estrogen patch & prometrium (progesterone) pills. Not synthetic estradiol or progestins. Estrogen & progesterone work in tandem, so your body needs both.

 

[bushdianee]

I can’t have estrogen due to the cancer risk. I was on Fosomax and the infusion will be Reclast. Not sure if those are spelled right.

 

[Minnie17]

I can’t have estrogen due to the cancer risk. I was on Fosomax and the infusion will be Reclast. Not sure if those are spelled right.

Reclast is an infusion for osteoporosis delivered thru an IV, normally runs over 15-30 minutes. The flu like symptoms are pretty rare and can be prevented somewhat with an increase in water and fluids for 2 days prior and 2 days after infusion (and of course the day of infusion). Also take Tylenol and/or Motrin the day of and for 2 days after infusion. The absolute most important thing about reclast and similar meds is notify your dentist you will be taking it, have any major dental work needed completed at least 2 months before reclast infusion. It is generally tolerated very well, over the 10 or so years we’ve been giving it less than a dozen folks have had flu like symptoms bad enough to not receive it again. Hope all goes well for you.

 

[Pea-n-Me]

Reclast is an infusion for osteoporosis delivered thru an IV, normally runs over 15-30 minutes. The flu like symptoms are pretty rare and can be prevented somewhat with an increase in water and fluids for 2 days prior and 2 days after infusion (and of course the day of infusion). Also take Tylenol and/or Motrin the day of and for 2 days after infusion. The absolute most important thing about reclast and similar meds is notify your dentist you will be taking it, have any major dental work needed completed at least 2 months before reclast infusion. It is generally tolerated very well, over the 10 or so years we’ve been giving it less than a dozen folks have had flu like symptoms bad enough to not receive it again. Hope all goes well for you.

Why, on the dental work?

Backstory, I had a complete hysterectomy almost 40 years ago at the age of 21 due to ovarian cancer. As a result my body has been without estrogen that long. I finally had a bone density scan done in 2015 after I broke my femur which showed osteoporisis. I was put on a weekly pill. I had another scan about 2 months ago that showed a decrease in density rather than being stable or increasing. Tomorrow I have to go to the hospital for an infusion. The only thing I've been told is that it will take a couple of hours and I may experience flu like symptoms for a few days. I am a little nervous. Thanks for any advice or information you can give.

They had talked to me about it in the hospital after my mother broke her hip. They emphasized that it was really important to help prevent future breaks. She did not wind up getting it because of other circumstances, but I was also a little concerned about the potential for flu-like symptoms given that she had just been through a nightmare of a hip fracture and repair situation and she needed to just heal from that first and go to rehab, etc. If circumstances were different she likely would’ve gotten it. Good luck with the infusion. Excellent info above.

 

[Straitlover]

Why, on the dental work?

Becasue of the risk of osteonecrosis of the jaw. Google it.

 

[Minnie17]

Why, on the dental work?

Reclast has a very rare side effect, osteonecrosis of the jaw. Again very rare, but can happen when dental surgery is done on patients receiving reclast. If dental surgery is required on a reclast patient, additional antibiotics may be ordered and the infusion may be delayed. Again rare, but worth knowing.

 

[design_mom]

My mom took Fosamax, then her doctor switched her to Recast. (She actually never had osteoporosis. She had osteopenia, but the doctor put her on the osteoporosis medicine as a preventative measure.)

In good news, she tolerated the infusions well and liked it better than Fosamax.

In bad news, in the last 8 months she's broken BOTH femurs and her surgeon believes the breaks are a result of Fosamax/Reclast. (Apparently they share a possible side effect of "abnormal femur breaks" and also osteonecrosis of the jaw (which, I'm guessing is why the previous poster said their office recommends not having dental work done close to the infusion time.)) My mom was in rehab with several other women who also had "fosamax breaks" of the femur, so mom's anecdotal opinion is that it might not be as "rare" of a side effect as it's presented as.

So, anyway... I'm sure that for many women the risks of NOT taking the drugs outweighs the risk of taking them, but my mom is pretty sorry that she did... and is more closely reading the "possible rare side effects" lists of her medicines.

 

[Pea-n-Me]

Becasue of the risk of osteonecrosis of the jaw. Google it.

Reclast has a very rare side effect, osteonecrosis of the jaw. Again very rare, but can happen when dental surgery is done on patients receiving reclast. If dental surgery is required on a reclast patient, additional antibiotics may be ordered and the infusion may be delayed. Again rare, but worth knowing.

That doesn’t sound like fun

 

[bushdianee]

Thank you so much for the information. I’m scheduled for a filling with the dentist next Wednesday. Guess I’ll give him a call and let him know about the infusion. I have 2 younger sisters who also have had ovarian cancer. The youngest who is in her late 40’s and about 4 years out from her cancer has osteopenia. The other sister in her mid 50’s and about 16 years out from her diagnosis so far doesn’t have either.

 

[design_mom]

Thank you so much for the information. I’m scheduled for a filling with the dentist next Wednesday. Guess I’ll give him a call and let him know about the infusion.

In good news, my mom’s dentist said a filling shouldn’t put her at risk for osteonecrosis. She was told that it’s only a risk if the bone is exposed (like an extraction or an implant). Probably wouldn’t hurt to give your dentist a heads up, but I don’t think the filling will be an issue.

 

[luvmarypoppins]

I had 3 or 4 recast infusions.
Had to have them because I take high amounts of synthroid to keep my thyroid levels suppressed due to thyroid cancer.
I am the poster child of what can go wrong will go wrong.
I got really bad flu symptoms - fever, chills etc.
The last infusion I felt pain from the bottom of my spine to going out the top of my head.
One infusion I had no bad side effects except a little achey.
My last bone scan showed bone growth in one area so it works.
Next month I am having another two year scan so we shall see.
Best of luck to you.

 

[easyas123]

Wow - this was a very informative thread, I'm glad I read it.
Good luck to you Bushdianee with your infusion.

 

[Kitty 34]

Backstory, I had a complete hysterectomy almost 40 years ago at the age of 21 due to ovarian cancer. As a result my body has been without estrogen that long. I finally had a bone density scan done in 2015 after I broke my femur which showed osteoporisis. I was put on a weekly pill. I had another scan about 2 months ago that showed a decrease in density rather than being stable or increasing. Tomorrow I have to go to the hospital for an infusion. The only thing I've been told is that it will take a couple of hours and I may experience flu like symptoms for a few days. I am a little nervous. Thanks for any advice or information you can give.

I get infusions every week for something entirely different but I just want to wish you lots of luck that your infusion and results will go well.

 

[bushdianee]

Thank you all for the information and well wishes. Everything went smoothly. Since it was the my first infusion they set it to run for 30 minutes rather than the usual 15-20. The doctor ordered tylonal for afterwards and had me stick around for about 30 more minutes for observation. Normally I'm a hard stick but she got the IV in on the first try. I hadn't been told to increase fluids before I read it on here so made myself drink a bottle of Gatorade before I went. I felt and feel fine. Thanks again.

 

[Imzadi]

My mom took Fosamax, then her doctor switched her to Recast. (She actually never had osteoporosis. She had osteopenia, but the doctor put her on the osteoporosis medicine as a preventative measure.)

In good news, she tolerated the infusions well and liked it better than Fosamax.

In bad news, in the last 8 months she's broken BOTH femurs and her surgeon believes the breaks are a result of Fosamax/Reclast. (Apparently they share a possible side effect of "abnormal femur breaks" and also osteonecrosis of the jaw (which, I'm guessing is why the previous poster said their office recommends not having dental work done close to the infusion time.)) My mom was in rehab with several other women who also had "fosamax breaks" of the femur, so mom's anecdotal opinion is that it might not be as "rare" of a side effect as it's presented as.

So, anyway... I'm sure that for many women the risks of NOT taking the drugs outweighs the risk of taking them, but my mom is pretty sorry that she did... and is more closely reading the "possible rare side effects" lists of her medicines.

Yes, thanks for this thread. I also have thyroid problems and have been diagnosed with borderline osteoporosis & osteopenia of the hip, years before women usually get their first bone density test done.

After the test, my thyroid Dr did nothing but say that we'll monitor & test in another year to see what my levels are then. But I was thinking I want something preventative other than being told to eat more calcium rich foods & take calcium supplements. So I went to the head osteoporosis specialist at NYU Medical Center. When he basically said the same thing, I asked if he would prescribe something like Fosamax or Prolia. He said no.

When neither Dr jumped on prescribing meds, preventative or otherwise, I had a feeling it was because the side effects would be possibly worse than whatever gains might be made.