Re: @SilleeMee and anyone else who has tried Eveni... - Page 3

FlyAway · ‎03-11-2010

Thanks for your replies.

When I had my first Dexa about 14 years ago, I was classified as osteoporosis, severe risk of fracture. I don't have the numbers in front of me but I do recall they were in the -3, -4 , -5 range particularly bad spine and neck. And this was only found because I fell, went for an xray, broke a rib and the radiol. said "by the way, you have osteoporosis".

After 2 years of Boniva at the time, there was no significant change up or down. Slightly worse.

The next several years have been one dental problem after the other. Still ongoing. Is this related to the osteo or Boniva? No doc or dentist gives me a clear answer.

I have lost at least 2 inches, I was only 5'1" to begin with, primarily in the spine. I have broken several bones, luckily nothing major.

Anyway, this is where I am. If any one else reading this is going thru meno or about to, please tell your doc you want a baseline Dexa. I was around 50 when going thru meno and neither my gyn or pcp told me to get a baseline. I think some of this could have been lessened if I did, and followed some recom. protocol to stave off the severity.

Good luck to all of you and thanks for reading.

SilleeMee · ‎05-22-2016

@FlyAway

I had my first DEXA when I was 46. I'm 68 now. It was done at an early age b/c I was diagnosed with an autoimmunue disease (scleroderma) which causes bone loss. Those T-scores showed osteoporosis and got medication for it and since then my T-scores were all in the osteopenia range for a number of years until recently. I had a severe adverse reaction to that medication (Zometa bisphosphonate infusion) so now it's the Evenity for me instead.

Boniva is a bisphosphonate and it does not build bone. What it does is reduce bone loss but the rate it does that varies between people. For some people it helps reduce further bone loss while for others it does nothing.

Osteoporosis disease can cause bone loss in the jaw bone also. People who have osteoporosis have fewer teeth b/c of tooth loss from a thinning jaw bone where teeth get loose and then things go down hill from there (gum recession/tooth decay) resulting in tooth loss. Drugs such as Boniva only complicates matters. People on bone density drugs need to take extra care with their dental situation. That's a given.

quadmimi · ‎12-27-2010

SilleeMee I know this is a different subject but hoping you see this anyway. What is the name of that (I think sweet potato) supplement you take? I think it's Earth something.

I tried it once (for my chronic constipation) I need to try it again. thanks

BExplorer · ‎12-08-2013

@quadmimi wrote:
SilleeMee I know this is a different subject but hoping you see this anyway. What is the name of that (I think sweet potato) supplement you take? I think it's Earth something.
I tried it once (for my chronic constipation) I need to try it again. thanks

@SilleeMee

"Great minds discuss ideas; average minds discuss events; small minds discuss people."--Eleanor Roosevelt

SilleeMee · ‎05-22-2016

@quadmimi wrote:
SilleeMee I know this is a different subject but hoping you see this anyway. What is the name of that (I think sweet potato) supplement you take? I think it's Earth something.
I tried it once (for my chronic constipation) I need to try it again. thanks

@quadmimi

I'm not exactly sure what supp but it might be the EarthMed brand of phytoceramides which contains sweet potato and rice powders inside capsules. If that's the one, I had no idea that it could help with constipation.

quadmimi · ‎12-27-2010

@SilleeMee wrote:
@quadmimi wrote:
SilleeMee I know this is a different subject but hoping you see this anyway. What is the name of that (I think sweet potato) supplement you take? I think it's Earth something.
I tried it once (for my chronic constipation) I need to try it again. thanks

@quadmimi
I'm not exactly sure what supp but it might be the EarthMed brand of phytoceramides which contains sweet potato and rice powders inside capsules. If that's the one, I had no idea that it could help with constipation.

Thats it SilleeMee, thank you. It did help some, I guess this is tied into bone loss in a way. My gastro Dr put me on this new med IBSRELA for my constipation. I asked him if it could in anyway be harmful to my bone loss. Nope he said. Well I decided to read the entire info on it from the website. Sure enough on page "a million" in the tests on rats at the end of the study they found it increased osteoclasts & eroded bone & decreased bone mass in several areas..It was only tested a year on humans & I am sure no one told the participants to go get their bones checked when they were done. I am hyper picky anything that can decrease my bone mass for sure. I think Drs just listen to the basics the companies say about new drugs, I will not take it anymore, I couldn't remember the name of the EarthMed. thank you

(sorry so long but I wanted to explain a bit)

SilleeMee · ‎05-22-2016

You're welcome @quadmimi

tsavorite · ‎03-09-2010

@SilleeMee wrote:
@FlyAway wrote:
I haven't posted on the Forums in ages (can't find my very old sign in) but this topic piqued my interest. If anyone on this thread would care to divulge the "rough" numbers of your Dexa scans? I am 69 and was told over 10 years ago that I had the bones of a 90 year old and was rec. to go on Forteo but I declined, for many reasons. Haven't had a scan since. My doc asks me every year and every year I say "what's the point?"
Anyway, I'm really curious as to your numbers compared to mine. Thanks.

@FlyAway
Both of my femurs were the worst with the lowest T-score of -2.8 (left femur). My FRAX score of hip fracture was 4.2% where greater than 3% is considered high risk.

@SilleeMee Hello.....I was hoping to ask you a question about your DEXA results. I recently had a DEXA and there was no measurement for my femur. Total hip, Femoral neck and Lumbar spine only. Is this a special request made by your doctor for the femur? and mine is just listing the most basic/standard ones they check every 2 yrs??

I did have a base line DEXA at 50 as I asked my gyno knowing I had to be at risk back then (met all the criteria). I had been on BC pills for 4yrs to help with my peri meno sympotms so I wanted to know where I was at going forward. Osteopenia in my femoral neck was my starting place. So I was behind in my bone bank even before hitting meno at 50. I did transition to HRT from BC pills and have basically stayed the same. No loss but no increase either.

But looking back at my DEXA not one of them has information on my Femur! LOL I also just found out some facilities can do a TBS (Trabecular Bone Score) it is software so they use the DEXA and check the quality of bone vs just the density.

Anyone have this done? I wish I had known about it and would have found a place that does it with my DEXA 2 months ago.

SilleeMee · ‎05-22-2016

@tsavorite

My Dexa scans have always been done on my femurs and spine. Bone density scans are usually done on bones that are most likely to break b/c of osteoporosis but keep in mind that a person with osteoporosis has bone loss in every bone and not just the ones they scan. So no matter which bone they scan, it should give an indication of whether or not there is a diagnosis of osteoporosis/osteopenia.

Your FRAX score can give more info about risk for fracture and that score is calculated based on your history, scan scores and TBS if used.

"Trabecular bone score (TBS) and the Fracture Risk Assessment (FRAX) tool are both used to predict the risk of fractures. TBS measures bone microarchitecture at the lumbar spine, while FRAX is an algorithm that considers multiple clinical risk factors to predict the risk of major osteoporotic fractures (MOF) and hip fractures (HF) over 10 years. TBS can be used to adjust FRAX scores, which can improve fracture risk prediction in some populations."

tsavorite · ‎03-09-2010

@SilleeMee wrote:
@tsavorite
My Dexa scans have always been done on my femurs and spine. Bone density scans are usually done on bones that are most likely to break b/c of osteoporosis but keep in mind that a person with osteoporosis has bone loss in every bone and not just the ones they scan. So no matter which bone they scan, it should give an indication of whether or not there is a diagnosis of osteoporosis/osteopenia.

Your FRAX score can give more info about risk for fracture and that score is calculated based on your history, scan scores and TBS if used.

"Trabecular bone score (TBS) and the Fracture Risk Assessment (FRAX) tool are both used to predict the risk of fractures. TBS measures bone microarchitecture at the lumbar spine, while FRAX is an algorithm that considers multiple clinical risk factors to predict the risk of major osteoporotic fractures (MOF) and hip fractures (HF) over 10 years. TBS can be used to adjust FRAX scores, which can improve fracture risk prediction in some populations."

@SilleeMee Thank you for explaining. So your DEXA never has the femoral neck value or total hip? I have always heard the spine and femoral neck are always done as they are the most likely to fracture and/or even wrist can be included. I get what your saying that it shows status to all the bones in the body. I had a screening done with Life Line prior to my 1st DEXA and they used a wand thing and did it on my shin bone...of course the result was not good and that along with other things I knew about my history triggered the talk with gyno for my base line DEXA to be done at 50.

Perhaps the facility one goes to or the doctor they see determines which bones are checked but even online I don't see the thigh bone/femur ever listed as what is checked. I see my doctor did have my wrist checked on that 1st DEXA but never again.