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Old 07-05-2007, 09:18 AM   #1
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Osteoporosis? Severe Osteoporosis? what is the difference?

Hi everyone, I am about to start taking my forteo injections on July 12th, I have been told I have severe osteoporosis, what is the difference between having osteoporosis and having severe osteoporosis? I have never had a fracture of any kind (knock on wood) there isn't any major osteoporosis problems in family history, cannot even remember anyone ever using the term. I never had any relatives that suffered any fractures that I know of, or did they have the typical hump on the top of there shoulders due to vertebrae fractures. I did have a total hysterectomy 25 years ago, was immediately placed on premarin 0.635, then went off of it because of the additional health problems connected to it, my bone mass went down the tubes about the same time I stopped premarin. I am listing my results from months ago and maybe if you would be so kind to help me figure this one out.
BONE DENSITY REPORT: dUAL ENERGY X-RAY ABSORPTIOMETRY
DXA MODEL; LUNAR PRODIGY, 41307

RESULTS
Lumbar spine (L1-4) : T-score- 3.1
Z-score 1.6

Left femoral neck : T- score -2.0
stable bone mass

Right femoral neck : T-score -2.2

PTH, Intact 24 range 10-60
Calcium PTH 9.8 range 8.5 - 10.5
phosphorus 3.9 range 2.5-4.5

Vitamin D 25 Hydroxy 42.3 range 31-80

Creatinine 24 hour ur 1.118 range 0.8-1.8

Calcium 24 hour ur 249.0 range 100-300

cross-link n-telopep 64.2 range 14.4-75.0

Thanking you all in advance, While gardening these thoughts crossed my mind and decided to act upon them. I have been thinking more about all of this since my day for injections of forteo is getting closer. Blessings! Wildflowers

 
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Old 07-05-2007, 10:31 AM   #2
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Re: Osteoporosis? Severe Osteoporosis? what is the difference?

Hi Wildflowers: I'm sure you'll do well with the injection... A positive attitude towards it can really help. That's not to say that it isn't a big step, that could cause some side effects, but hopefully you'll be like most and not have any.

Our mind is a powerful thing and if you go into something with the idea that it will work, that's half the battle.

Your question about severe osteoporosis is a good one, since I've heard differing opinions on this. According to what I've been told, and what the WHO say's about severe osteo, it's any score below -2.5 with one fragility fracture. You can read this below.

[url]http://courses.washington.edu/bonephys/opbmd.html#WHO[/url]

Since you haven't had a fracture, I would ask your dr if they are basing this statement on t-score alone or not.

Your blood tests look really good. Keep track of the n-telopeptide score so you can see how you progress on your next test with the Forteo. My bone mass plunged as well when I went through early meno.

Did you say your relatives had the dowagers hump, or did I misunderstand? Usually the c curve in the spine is from fractures or curvature of the spine like scoliosis. My grandmothers had the curve, but it was from osteo, and fractures.

Good luck...

Last edited by DesertBloom; 07-05-2007 at 10:48 AM.

 
Old 07-05-2007, 01:39 PM   #3
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Thumbs up Re: Osteoporosis? Severe Osteoporosis? what is the difference?

Thank you Desert bloom, your info was greatly appreciated. My family did not have dogwagers hump, although I have a small curvature from posture. There is alot of scoliosis in the family because of CMT, however my slight curvature had to do with posture. I will definitely have a positive attitude regarding the injections Desert Bloom, you are so right, the majority of the battle is from the neck up. I have alot of questions to ask the nurse at my class on July 12th. Can I stop forteo at anytime or do I have to be weaned off of it, like some other meds. Would I be able to take the forteo every other day if I would notice some side effects? I heard the words pseudo dementia on a previous thread that was maybe caused by forteo, I looked it up and found out it is totally different from regular dementia, its more like depression, I suppose that is why they call it pseudo. Lots and lots of questions for the nurse. This inquiring mind wants to know. Blessings! Wildflowers

 
Old 07-05-2007, 02:15 PM   #4
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Re: Osteoporosis? Severe Osteoporosis? what is the difference?

Hi Wildflowers: You're probably sick of hearing this but I do really think you'll do fine... I'm glad you didn't take offense with my statement on a positive attitude, because sometimes people don't like to hear that. I'm not sure why, unless they think that you're presuming that someone has a bad attitude which couldn't be further from the truth.

You can stop Forteo at any time and DO NOT have to be weaned. I had to stop it for 5 weeks, and I stopped it and went right back on. I would ask the nurse these other questions, becaue I personally don't think it's a good idea to take it every other day, but since I'm not a nurse or dr I don't know the answer.

I never had any depression from the Forteo, but it wouldn't surprise me if someone wasn't "somewhat" depressed about having to take it, given the implications of having a disease, and maybe that's the cause not the actual drug.

I wouldn't pay too much attention to the terms severe, moderate etc. You are going to be taking the fastest/strongest med known to man to help with osteo, so you've got a fantastic shot. I constantly hear about people with scores in the -4 & -5's that can't take it due to their insurance

Good luck again, and keep us posted along the way, in case anything comes up. Hopefully it will become a second nature process you do everyday, that you won't think much about after some time, like it did for me.

 
Old 07-05-2007, 04:52 PM   #5
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Re: Osteoporosis? Severe Osteoporosis? what is the difference?

Hi Desert Bloom, I thank you kindly, I do believe also that depression could be a contributing factor, it seems there is little time between diagnosis and having to decide what form of treatment best suits our needs. When I look back just over the several months since I have been diagnosed, I went through so many different levels and plateaus of emotions. Without sounding redundant, all of you helped me so very much to sort out all those feelings and fears. I continue to feel that gratitude deep within me. Blessings! Wildflowers

 
Old 07-06-2007, 06:15 AM   #6
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Re: Osteoporosis? Severe Osteoporosis? what is the difference?

Hi Wildflower and Desertbloom..i've wonder the same thing about the difference between osteo and severe osteo. Even with the improvements i saw in a year, the report still said severe osteo, high risk of fracture. Like you i have never had a fx of any kind, no one in my family has and other than the Graves disease (hyper thyroid, now under control) i have none of the risk factors. This is my opinion...i think when the DEXA is read if the number is below -2.5 its automatically classified as severe. if it was above -2.5 it would be considered osteopenina, so there is no grey area between the two, its an either or thing. It seems to me that there should be some distance between having it and having it severe. Maybe they say severs so it will prompt people to do something about it instead of the wait and see thinking.

Good luck with the forteo, Betty Lou. I know you do just fine on it..the power of postive thinking is all around you. Thought for the day...a weed is nothing but a misplaced flower. Have a good weekend...take care...phyllis

 
Old 07-06-2007, 07:48 AM   #7
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Re: Osteoporosis? Severe Osteoporosis? what is the difference?

Hi Phyllis, What really got me personally thinking about the difference in osteo and severe osteo, many folks that I would talk with about osteo, friends, family, doctor office etc. when I mentioned I had severe osteo, they would all say Ahhhhhhh!!!!!!! so sorry to hear that your osteo is so severe, and get a look of absolutely sorrowfullness for me, and then they would say. " I just have osteoporosis." I would think Hey! wait a minute whats the difference here, most of there results were worse than mine. I thought maybe family history, fractures, etc were taken into account, maybe it was just the way it was diagnosed in order to receive appropriate meds.
I can get a headache and then I can get a severe headache, believe you me I know the difference. Therefore it creates a feeling that your back is going to break in two at any moment with severe osteo, compared to feeling you have some control over the treatment and outcome.
I must spend to much time out in the garden, I just also realized that in the bone density test results, the only thing they scan is the lumbar and hip area, what about the thoracic and your other bones. I find myself smiling on the inside for how absolutely long it takes me to figure this all out. Please don't leave me, I need all the help I can get, that's what happens when your a day dreamer, and my mind absolutely is always out in the garden.
Phyllis I look differently at weeds now since you mentioned they were a misplaced flower, I have a sign out in the front yard that reads "Weeds for sale, pick your own"
Thank you for letting me vent, otherwise I would be talking to myself, or worse talking out loud and that could really get me into trouble. Blessings! Betty Lou

 
Old 07-06-2007, 08:56 AM   #8
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Re: Osteoporosis? Severe Osteoporosis? what is the difference?

Wildflowers,

I've done a lot of research on osteo since being diagnosed 4 years ago. "Severe" osteo is classified as having a score of -2.5 PLUS a fragility fracture (not from falling). So far I've tried all the meds out there but can't tolerate side effects. I haven't had a scan in 2 years -- no fractures. Last score was -2.7 in both spine and hip. I read "The Myth Of Osteoporosis" by Gillian Sanson, and I believe that osteo is being extremely hyped by the pharmaceutical companies to scare us all.

 
Old 07-06-2007, 09:18 AM   #9
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Re: Osteoporosis? Severe Osteoporosis? what is the difference?

Hi Piano: Haven't heard from you in a while. I've read the same thing as you on ''severe" osteo.

In my first post I said: "Your question about severe osteoporosis is a good one, since I've heard differing opinions on this. According to what I've been told, and what the WHO say's about severe osteo, it's any score below -2.5 with one fragility fracture. You can read this below."

[url]http://courses.washington.edu/bonephys/opbmd.html#WHO[/url]

When I was first diagnosed, my score was -3.6 and on my QCT report it didn't say anything other than the #. Nothing about severe etc. When I went to my pcp she said I had severe osteo after she ask if I had a fx (which I did). So I really don't know what the answer is if you can get differing answers depending on who you ask or who reports it to you. For me it's a matter of semantics, it's really just a word until it's effected your life greatly through great physical limitation. I talk to people who've had 20 spontaneous fx's, and even some of them don't call it severe, but then some do.

I guess it's how you look at it.

 
Old 07-06-2007, 09:20 AM   #10
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Re: Osteoporosis? Severe Osteoporosis? what is the difference?

Hi Betty Lou...i thought you'd like the saying. I saw that on a brick wall when i was a kid and it's always stuck with me. I've used it as life guide....not everything is what it appears to be if you look at it from all angles.

Betty Lou, you have come a long way since you first came to the board. You've put things into perspective and are moving forward to do the best you can do for you. We all choose the path that is right for us and if you beleive something will work then it will. I wear magnetic bead bracelets and don't know if they really do anything but i think they do..thats all that matters.

With all the yard work you plus the around the house stuff i would tend to think that even if the all the bones aren't as dense as they used to be they are still strong. I may not have the densest bones, but i know they are strong and getting denser. Are you continuing with the weght bearing exercises and walking? I started a water aerobic class last month and feel stronger already, i have the sore muscles to prove it...hahaha.

Isn't it great when you have a light bulb moment and everything falls into place? have a good weekend..take care...phyllis

 
Old 07-06-2007, 04:00 PM   #11
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Re: Osteoporosis? Severe Osteoporosis? what is the difference?

Hi Wildflowers,

I agree with you completely about the effect of the "severe" word used with osteoporosis. It has been used in my case by doctors and it's like a big negative weight descends on me- like I am a lost cause or something. It's also seemed like it made it inevitable that the worst was going to happen and soon at that.

I have seen a few docs about this diagnosis and my feeling is that they really should learn about positive thinking and supportive communication! I am not asking for false hope BUT there is a place for positive encouragement.

I say they should drop the word severe and add some encouragement Their negative approach alienated me from my body and made me very afraid. It's now been nearly a year from the diagnosis and I feel that I am just coming out from the hole. I am working with my body through walking, tai chi , weight lifting and working on my spirit in a variety of ways. All of this is really helping ALONG with the incredible people that I have met( in cyberspace, that is) through this board.

Good luck to all of us here and may we keep our spirits up . There is plenty of room for hope

 
Old 07-06-2007, 04:59 PM   #12
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Re: Osteoporosis? Severe Osteoporosis? what is the difference?

Piano, I love the piano, do you play the piano? I also read the myth of osteoporosis and I was truly impressed, I do believe that is why I am having so much concern with starting the forteo injections. I remember mom and grandma working out in the garden on the farm and they were "strong women" inside and outside, wouldn't I also have those genes? Then again they didn't have a total hysterectomy, that sorta changes the dynamics.
I just received in the mail from my insurance company that all medicines for osteo have to be pre-authorized, actonel, boniva, all of them. They said that to many folks are taking the osteo drugs for prevention without having any form of osteo at all. I couldn't believe that anyone would take those nasty drugs if they didn't have too.

Phyllis, I have been doing my wt. bearing exercises. I walk and I do the exercises with a rubber band the physical therapist gave me months back. I put on one of those mileage pedometer( I think it's called )and after reading the amount of walking I do in a day, 11,000 steps or more, I realized (you are right) I do alot of exercise, in the garden and housework and stuff.
I have to tell you a cute story that happened to me over the 4th of July. The whole family spent the 4th at my daughter's home, bbq etc. Anyways, my son Paul went to my daughter and told her, " Boy" mom really has some neat neighbors where she lives, but really some different and unique names, He mentioned that I was talking about my friends phyllis, montesflus, desertbloom and osteoblast, Tam laughed, said those are mom's heatlhboard friends, son Paul said, mom talks like they live next door. Anyways, I quote all of you to my family all of the time, in fact my grandchildren, ask me how desert bloom is doing? how is phyllis? osteoblast? and montesflus doing, they call montesflus, montyflows. Boy, wait till I add piano in there, I will really give my son paul a chuckle. love you all blessings! betty lou

 
Old 07-06-2007, 05:16 PM   #13
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Re: Osteoporosis? Severe Osteoporosis? what is the difference?

Thank you osteoblast, I was also shaking in my boots when they told me it was severe, I will not refer to myself ever ever again that Betty Lou has severe osteoporosis. I think the way the media, drug companies etc. etc. they are severe in the approach to osteoporosis, you are so right, they could be a little more kinder and gentle. heck! I am looking for a quality of life, not quantity. It's no fun tiptoeing through life, In fact osteoblast, I use my best china for everyday, I put my best clothes on when I garden, makes no difference to me if I wear it to the store or out among my flowers, they don't care, when I leave this planet, believe you me this ole' body is going to be all used up, no regrets. Thank you for reminding me. I don't know if you know what the gibson hair-do is, I have worn my hair in that style since I was in my 30's, I loved the victorian hair-do, architecture, and the whole thing, my favorite movie is "somewhere in time." OOps!! there I go again, off the subject, sorry!!!!! take care osteoblast betty lou

 
Old 07-06-2007, 05:20 PM   #14
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Re: Osteoporosis? Severe Osteoporosis? what is the difference?

Hi All: I agree with you all as well, but my biggest problem besides, what I already mentioned, is the fact that there is an indeterminate rate of error on all dxa's, so if "severe" means any score below -2.5 with a existing fragility fracture-like the World Health Org say's-then how do you know if you are really severe or not, if the scan is slightly off. Like Phyllis said there's no grey area, if you are at or below -2.5 you could be severe or if you're -2.4 you have osteopenia. We all know there is some percentage of error, so are we really at the severe stage or not. If we had another scan done an hour later it could say we have osteopenia, so of course we are no longer severe or do we even have osteoporosis, this doesn't make a whole lot of sense. I still don't know what the actual definition is, since there is the one above that I hear a lot and others where they are using t-scores alone, without including fx's. So which one is correct?

None of my reports used the word severe, only my pcp, said that after I told her I'd had a fx, which she already knew. My mineral metabolism dr has never used that phraseology, or has anyone else. So does it depend on the particular belief of one dr over another-who knows. Hearing the word severe really didn't change anything for me other than to go on forteo from actonel. I already knew I had osteoporosis from a bone biopsy done many years ago, way before the word osteopenia had ever been made up-that's right made up for some reason. Well the word probably came about to give people a warning stage, to decide on early treatment. Before the word came about, you only found out that you had it. I don't want to get into the whole drug co thing etc, but I'm sure there are those thinking in that direction as well.

I have no trouble understanding grade 1 etc cancer, but I have a lot of trouble with this severe word. If someone has a low t-score and has many physical limitations from fx's then severe seems to apply, but like I said I know people in that range who don't look at it that way-they prefer the positive approach-which is the way I think. It's a word that means one thing to one person and something else entirely to someone else. Most people have no clue what severe osteoporosis is anyway.

I don't believe scaring people with a word that has differing meanings is right! Most people feel that severe puts a extra level of anxiety on to the diagnosis, which is what it's suppose to do, but not when severe is so hard to define, in this case. And I can't tell you how many drs have asked me what does severe osteoporosis mean? And I have to admit I was at a loss, as to what to say. My neuro surgeon asked me this, when we were talking about kyphoplasty and whether or not I could have that procedure if I sustained another fx with the rods and screws in my back being somewhat in the way for that type of repair. I guess I had a confused look on my face when he asked that question, because he said "no really I have no idea what that means, is it BAD? At that point I changed the subject, mentioning I didn't want to loose a lot of height to fx's like my grandmothers, and aunts did, but I wanted to know if using the cement to fill the fracture would work for me with all the back surgeries I've had (kyphoplasty/vertebroplasty).

Phyllis: Do you remember what bonebabe said about severe osteo? Wasn't it a score of -2.5 with a standing non traumatic fx?


I think we are all doing pretty well with all of this, so just keep doing whatever it is that keeps you well and happy...

Last edited by DesertBloom; 07-06-2007 at 05:21 PM.

 
Old 07-07-2007, 05:23 AM   #15
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Re: Osteoporosis? Severe Osteoporosis? what is the difference?

DesertBloom..i ask bonebabe, i'll post when i get a reply from her. take care...phyllis

 
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