topic Re: Prolia ? in Wellness

Prolia ?

nekodaisy — Mon, 18 Oct 2021 21:05:44 GMT

I have gone through all the posts on this subject and I am more confused then ever.

Let me begin by telling you a little history about myself. I am 59 and just got done going through radiation treatment for breast cancer. There was no chemo involved. I got the bone scan last week and was told by phone that I needed to start prolia and my appt is with my cancer doctor this Friday. I also an taking letrozole for the hormone blocker. I am only one week out on the radiation and the medicine.

So today I had an appt a follow up appt about my radiation and how I was doing on the letrozole. He then told me the results about my bone scan which I was really not prepared for. There were no negative numbers like you have all posted in your prevoius messages. Mine just said I had a 10 percent chance of a bone fracture in the next ten years and a 1.5 percent hip fracture in the next ten years.

The appt this Friday I was planning on taking my husband with me because he always has questions that I tend to forget. He just through me for a loop today when he told me all this. He did look at my mouth and I have a boat load of caps and that is the most scariest side effect. I have no pain other then waking up in the bed on the wrong side. I can still run and do all kinds of things. I have never had a fracture or a broken bone. Now that I am getting back to normal I am once again exercising.

Thanks for any feedback you give and I will be going and talkng to him again this Friday. They had to get approval from my insurance company and it may not even go thru between now and Friday.

The side effects sound awful and I don't want to start feeling awful when I feel normal in every way.

Re: Prolia ?

phoenixbrd — Mon, 18 Oct 2021 21:26:44 GMT

You are a warrior! So glad you are up and running....I don't have experience with your situation. Like you, I would be very concerned/conscious of what I put in my body especially given your history. Just want to wish you much health and happiness on your journey to excellent health!

Re: Prolia ?

LCR — Mon, 18 Oct 2021 21:28:32 GMT

Hi, nekodaisy. I haven't read any of the other Wellness posts on this because I'm usually on the Beauty forum, but I saw your post and thought I'd write you.

My situation isn't exactly like yours because I haven't had cancer, and I don't know how that and radiation therapy affects taking Prolia. However, I had a total hysterectomy at age 37. That left me a perfect candidate for developing osteoporosis in later years. I'm 71 now. I was on the border of osteopenia/osteoporosis and started taking Prolia twice a year about 5 years ago. It not only stopped bone loss but also regenerated some bone so that now I'm only in the osteopenia range, not osteoporosis. It's just a simple shot, absolutely no side effects ever. My doc says patients used to have to come off Prolia after a while, but additional research has shown that now you can stay on it indefinitely, if you are doing well and all indicators are good. It is expensive, but mostly covered by insurance.

You've been through a lot, but if all indicators are good for you, I hope you'll give it a go. My mother-in-law declined to get it, and over time she shrunk 3 inches in height and eventually died from complications after breaking her hip.

My very best wishes to you.

Re: Prolia ?

millieshops — Mon, 18 Oct 2021 21:35:00 GMT

@nekodaisy I heard identical numbers from my endocrinologist a week ago. I am a decade older than you, but have had no radiation or chemo. All that doc told me was that whenever we finished testing for potential problems totally unrelated to those bone issues then we could take time to discuss alternatives. She said nothing that made me feel time pressured. I am trying to get more sun and more calcium in the meantime.

I would tell you not to worry but I could also tell a river to climb a mountain, couldn't I?

Re: Prolia ?

LCR — Mon, 18 Oct 2021 21:43:58 GMT

nekodaisy, forgot to tell you that every tooth in my mouth is fake in some way (veneers, crowns, etc.) and I've had no dental issues with Prolia either.

I know we all have to be cautious and as educated as possible about medical procedures, but the technology is so great these days and getting better all the time that I think we should take advantage of everything we can to maintain quality of life.

Re: Prolia ?

KingstonsMom — Mon, 18 Oct 2021 22:21:47 GMT

I had a similar experience as @LCR, except that I had osteoprosis for several years with -3 on my bone scans.

I started Prolia about 5 years ago and my bone scans are now showing that the osteo is no longer deteriorating bone and has regenerated some.

I read all of the horror stories about side effects too and I'm not negating those reports, but I had absolutely no side effects.

I couldn't even tell when I got a shot (2 x a year).

Re: Prolia ?

froggy — Mon, 18 Oct 2021 22:25:35 GMT

I am taking letrozole also which, as you know, blocks estrogen production thereby causing bone loss. I don't think it's so much what your bone scan says now but the effects you may suffer in the future. I needed a lot of dental work and had to get it all done before my first Prolia injection. I chose to get a triple bridge rather than implants beecause I didn't want to wait long enough for the bones to heal before getting the injection. Have you spoken to your dentist about your hesitancy - he would be the best to advise based on your situation.

ETA: I have had zero side effects from the Prolia.

Re: Prolia ?

Zaimee — Mon, 18 Oct 2021 23:54:15 GMT

@nekodaisy

I totally understand your concerns. I, too,went to the internet and read the many, many reports of this bad drug. I did not want to take it either. I, too, am a breast cancer survivor. I had chemo, surgery, NED, and radiation. I do not take any after meds because I had Triple Negative and nothing works. I am 5 years out now.
But...

all of my doctors, especially my radiologist and my oncologist said to take it!

So I did and after 1 1/2 years my osteoporosis is now osteopenia. I go every 6 months and have not have any side effects. They do blood work before and after and all good.

Speak to your other doctors for their opinion since they know your history.

Good luck.r

Re: Prolia ?

Zaimee — Mon, 18 Oct 2021 23:57:32 GMT

@nekodaisy I forgot to add that I was very concerned about the jaw issue as I have had TMJ for decades ( have a splint device for night) so I spoke to my dentist who had no clue about Prolia and had to research it.

Re: Prolia ?

Effie54 — Tue, 19 Oct 2021 01:54:34 GMT

Please do your research before you take the shot! My functional medicine doctor is against Prolia for many, many reasons. Be careful! My orthodontist and dentist both said they won't work on those taking those type of drugs.

Re: Prolia ?

NickNack — Tue, 19 Oct 2021 17:57:19 GMT

@nekodaisy I have been on Prolia for four years due to osteoporosis. I have had no side effects at all. I tried to take Fosamax before Prolia and had so much bone pain I had to stop. My doctor has said that most of her patients don't have any side effects from Prolia. I no longer have osteoporosis after being on Prolia. It is now osteopenia.

I discussed this with my dentist, and he had no concerns with me being on Prolia.

My sister started Prolia last year after radiation treatment for breast cancer. She hasn't had any side effects either.

Re: Prolia ?

BirkiLady — Tue, 19 Oct 2021 17:39:10 GMT

Another who is on Prolia every six months. I always have the lab work done first, then an office visit with my Rheumatologist, and then the Prolia infusion. It's pain-free and I'm back in my car and able to continue with life. No side effects ever. I've always driven myself.

It was working so well for me. My bones were improving, until I was involved in a car accident (broad-sided, both vehicles totaled; my back had several fractures, my knee also was fractured, etc.). My Rheumatologist switched my medication to Forteo daily injections for two years, which really BUILDS strong bones. It worked.

I'm now back on the Prolia, which is maintaining and ensuring my bones continue to stay healthy. I plan this procedure for the rest of my life. Modern medicine is amazing. We're so fortunate!

Re: Prolia ?

Witchy Woman — Tue, 19 Oct 2021 20:33:56 GMT

@NickNack

I tried Fosamax a year ago and, within a month of taking it, the pain in my hips/joints was unbearable. I could hardly walk.

I'll likely have a scan this year and see where I am, and not sure what I will do in the future. However, it will not include Fosamax.

Re: Prolia ?

SilleeMee — Tue, 19 Oct 2021 21:07:10 GMT

Several years ago I was given one yearly dose of Zometa, which is another brand of bisphosphonate, and I had terrible complications from that one dose. I've told my story about that experience here before and I won't go into again. But after that awful experience I decided to look into alternative solutions for my thinning bones and I found silica supplements to be a success for me. My bone density went from a case of osteoporosis to one that is normal as can be now. I'm happy as a clam. I take bamboo silica (same as silicon) extract every single day and it has helped tremendously.

Article from the NIH: (it's a technical read so skip to the "Conclusion" at the bottom to get to the point of the article)

"SILICON AND BONE HEALTH"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2658806/

Re: Prolia ?

Witchy Woman — Tue, 19 Oct 2021 21:16:40 GMT

@SilleeMee

Yes, I recall reading your post some time ago and promised myself I would do something. You mentioned the brand of product you used, and I simply let it slip my mind.

If you don't mind, could you post it again. This time, I'm just going to order it!

Thanks so much. Given my history with Fosamax, I don't want to risk taking another medication.

Re: Prolia ?

SilleeMee — Tue, 19 Oct 2021 21:29:18 GMT

@Witchy Woman wrote:
@SilleeMee

Yes, I recall reading your post some time ago and promised myself I would do something. You mentioned the brand of product you used, and I simply let it slip my mind.

If you don't mind, could you post it again. This time, I'm just going to order it!

Thanks so much. Given my history with Fosamax, I don't want to risk taking another medication.

@Witchy Woman

If you look on Amazon for Bamboo Silica Powder you'll see two brands listed there first...BulkSupplements brand and also Microingredients brand. Those are the same except Microingredients is organic the other is not...your choice. I take one heaping 1/4-teaspoon daily mixed into my greens drink. The powder will settle a bit so stir and quickly consume it or keep it stirred.

Re: Prolia ?

SilleeMee — Tue, 19 Oct 2021 21:33:44 GMT

I haven't found any literature about any side effects from taking silica supplements...in case you were wondering.

@Witchy Woman

Re: Prolia ?

Witchy Woman — Wed, 20 Oct 2021 10:39:42 GMT

@SilleeMee

Thanks again!

I ordered the Micro Ingedients brand and it will be here tomorrow.

Although I do take Andrew's Hair Skin and Nails, and it seems to help with my skin and nails, my thinning hair has shown little or no improvement.

I don't expect miracles, but feel it's worth a try.

Will keep you posted!

Re: Prolia ?

Witchy Woman — Thu, 21 Oct 2021 19:37:14 GMT

@SilleeMee

My bamboo arrived and I noted you use a heaping 1/4 teaspoon a day.

Wondering how you arrived at that amount. Packaging says "2 scoops" but I've yet to find the scoop

Might be buried in the powder so I'll dig around a bit more.

Thanks for your help.

Re: Prolia ?

SilleeMee — Thu, 21 Oct 2021 20:06:07 GMT

@Witchy Woman wrote:
@SilleeMee

My bamboo arrived and I noted you use a heaping 1/4 teaspoon a day.

Wondering how you arrived at that amount. Packaging says "2 scoops" but I've yet to find the scoop

Might be buried in the powder so I'll dig around a bit more.

Thanks for your help.

@Witchy Woman

The bag I have says one serving size is 500mg or about a rounded 1/4-teaspoon. Microingredients brand says theirs is 600mg in one serving...not much different. It's not critical.