What to take for osteoporosis

Posted by flowergal @flowergal, Sep 25 6:20pm

On Letrozole. Dexa scan shows back to osteoporosis in my spine, other areas still osteopenia.

Oncologist wants me to go on something. I have read many of these posts and am scared about more repercussions from another drug.

Years ago (before BC) I was on fosomax. I think it gave me gerd. What is the lesser evil here ? I'm 69, trying to stay active and capable of watching my grandkids.

I do take Vitamin D and have for years. Generally 5000 units. (Now with k- know better do better)

Any guidance is appreciated.

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@flowergal,
I can recommend Forteo from personal experience. I have the opinion that it is the very best of the pharmaceuticals. It builds the finest bone and is quite effective in the spine.
First though, get bone markers CTX and P1NP, so you have a baseline. Repeat the bone markers after two months of the medication.
Some do have negative reactions to this drug in which case you can stop taking it. It leaves your system withing 24 hours.
Others will have different opinions, (but don't listen to them). Seriously, though I only have experience with this one medication. And you should question everything I write.
Bless your struggle with luck.

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My hubby's endo prescribed Reclast, and he had his first of the annual injections this past April (5 months ago) with no side effects.

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@flowergal I hope you are seeing an endocrinologist.

I did letrozole for 5 years with preexisting osteoporosis which got much worse and I fractured my spine a few times- pain and disability result.

My endo did not want to do Reclast during my cancer treatment because at the time they thought it worsened afib. I did Tymlos after treatment and my bones improved dramatically.

Most people on aromatase inhibitors like letrozole do Reclast or Zometa (both zoledronic acid). These drugs are thought to possibly have some protective effects in terms of spread to bones. But they also reduce the effectiveness of bone builders like Tymlos, Forteo and Evenity.

An endo needs to talk to your cancer doctor about whether you can take Tymlos or Forteo during your letrozole treatment. As suggested to me, you would then follow it up with Evenity then Reclast or directly to Reclast.

I did 2 years Tymlos, 4 months Evenity and now Reclast and am doing well.

We don't know what your bone density is. If osteoporosis is mild you could just do the usual Reclast with your letrozole. Most people I know do Reclast with their letrozole.

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@windyshores

@flowergal I hope you are seeing an endocrinologist.

I did letrozole for 5 years with preexisting osteoporosis which got much worse and I fractured my spine a few times- pain and disability result.

My endo did not want to do Reclast during my cancer treatment because at the time they thought it worsened afib. I did Tymlos after treatment and my bones improved dramatically.

Most people on aromatase inhibitors like letrozole do Reclast or Zometa (both zoledronic acid). These drugs are thought to possibly have some protective effects in terms of spread to bones. But they also reduce the effectiveness of bone builders like Tymlos, Forteo and Evenity.

An endo needs to talk to your cancer doctor about whether you can take Tymlos or Forteo during your letrozole treatment. As suggested to me, you would then follow it up with Evenity then Reclast or directly to Reclast.

I did 2 years Tymlos, 4 months Evenity and now Reclast and am doing well.

We don't know what your bone density is. If osteoporosis is mild you could just do the usual Reclast with your letrozole. Most people I know do Reclast with their letrozole.

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Thank you for this information. I have osteopenia in other scanned areas and osteoporosis in my spine.

I do have an endocrinologist but have never talked to them about this. Will see what they say.

The information you provided is very helpful. It's all so confusing. Hoping I make the right decision!

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@flowergal

Thank you for this information. I have osteopenia in other scanned areas and osteoporosis in my spine.

I do have an endocrinologist but have never talked to them about this. Will see what they say.

The information you provided is very helpful. It's all so confusing. Hoping I make the right decision!

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Thanks @windyshores! At 59 yrs and only 1 year into Letrozole for invasive lobular breast cancer, my endo recommended Fosamax which Ive been on for 8 months. I also have chrohns (inactive) and thought I was okay with side effects but most recently horrible pain in lower GI so I'm guessing the Fosamax in aggravating Chrohns. Oncologist suggested Zometa as you mentioned above but I wanted to start with oral weekly as had fewer side affects than the IV Reclast, Zometa. Now I'm just not sure and struggling who to talk to, GI doc, Endo or Oncologist. All so confusing. I'd like to just do a hard stop with Fosamax but Endo did emphasize that he was worried I could injure spine by even stepping off the curb. I live in Boston, walk a ton but really getting harder. Dana Farber in Boston is where my onco is and she would most likely tell me to try Zometa. I'll report back as I see her next month. xoxo

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@semurrey

Thanks @windyshores! At 59 yrs and only 1 year into Letrozole for invasive lobular breast cancer, my endo recommended Fosamax which Ive been on for 8 months. I also have chrohns (inactive) and thought I was okay with side effects but most recently horrible pain in lower GI so I'm guessing the Fosamax in aggravating Chrohns. Oncologist suggested Zometa as you mentioned above but I wanted to start with oral weekly as had fewer side affects than the IV Reclast, Zometa. Now I'm just not sure and struggling who to talk to, GI doc, Endo or Oncologist. All so confusing. I'd like to just do a hard stop with Fosamax but Endo did emphasize that he was worried I could injure spine by even stepping off the curb. I live in Boston, walk a ton but really getting harder. Dana Farber in Boston is where my onco is and she would most likely tell me to try Zometa. I'll report back as I see her next month. xoxo

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@semurrey y sending you a PM.

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I have been on Prolia for 13 years and have developed osteonecrosis of the jaw- not fun! I caution everyone to think hard about using this drug. I am now off of it and am seeing a Naturopath doctor to heal and then build the bone I need through diet and nutrition.
Has anyone gone off Prolia and NOT gone on Forteo to repair the effect of Prolia?

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I am 78 and was in perfect health a year ago. Then had three burst compression fractures I think triggered by a fall backward in driveway cracking my skull. The crumbled vertebrae could not be treated with the cement just had to let heal. After four months of horrific spasms and pss as in for two of them they were completely healed.
I’ve been doing Kevin Ellis’ Stronger Bone program.
I highly recommend watching his free hour long video on YouTube by that title. Your eyes will be opened and a lot of your fear displaced. I wouldn’t dream of going near the drugs at all after the dangerous risks I’ve read of. My doc advised against the Prolia in particular because the minute you miss a dose by a bit or get off your bones will crumble. A couple on here have backed that up from experience. I now make sure I’m getting st least 90 grams of protein a day, take collagen every single day that has Fortibone in it, walk about ten miles a week on my treadmill along with some muscle strengthening exercises for my back, and ear 6 prunes a day which have been shown to slow down bone loss. BA

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@debbclay

I have been on Prolia for 13 years and have developed osteonecrosis of the jaw- not fun! I caution everyone to think hard about using this drug. I am now off of it and am seeing a Naturopath doctor to heal and then build the bone I need through diet and nutrition.
Has anyone gone off Prolia and NOT gone on Forteo to repair the effect of Prolia?

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@debbclay according to "Great Bones" (McCormick), Dr. Ben Leder's YouTube video and both my endocrinolgists, patients do not do Forteo after Prolia: it is not effective.

The usual course is Reclast after such a long time on Prolia. If you have stopped Prolia and have not started Reclast, then, according to my sources and doctors, your fracture risk is very high.

Prolia makes osteoclasts (that break down bone) go dormant, so to speak, and when the drug is stopped they all come rushing back to work.

I plan on using diet and exercise as well as supplements when I finish meds, but I would not personally rely on those after Prolia from what I have been told. Do you have an endocrinologist you trust?

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@semurrey

Thanks @windyshores! At 59 yrs and only 1 year into Letrozole for invasive lobular breast cancer, my endo recommended Fosamax which Ive been on for 8 months. I also have chrohns (inactive) and thought I was okay with side effects but most recently horrible pain in lower GI so I'm guessing the Fosamax in aggravating Chrohns. Oncologist suggested Zometa as you mentioned above but I wanted to start with oral weekly as had fewer side affects than the IV Reclast, Zometa. Now I'm just not sure and struggling who to talk to, GI doc, Endo or Oncologist. All so confusing. I'd like to just do a hard stop with Fosamax but Endo did emphasize that he was worried I could injure spine by even stepping off the curb. I live in Boston, walk a ton but really getting harder. Dana Farber in Boston is where my onco is and she would most likely tell me to try Zometa. I'll report back as I see her next month. xoxo

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Good luck! These decisions regarding what drugs to take, the side effects etc are difficult.

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