Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Treatment

JamiAnthony
  • By JamiAnthony
  • Posted June 16, 2009 at 9:50 pm · 26 replies
  • Shared with the public
0 Recommendations

I am looking to see how other young adults (early 30's) are treated for osteoporosis. I have been told that there are no FDA approved drugs for people my age. Any advise???

Explore topics in this journal entry and replies:

Exercise Surgery Hemochromatosis Forteo Fractures Pregnancy Fosamax Osteopenia Hyperparathyroidism Osteoporosis Progesterone Evista

26 replies

bethanyb

I would like to know this too. I'm 32 and was recently diagnosed with Osteoporosis. My doctor wants me to take fosomax, but I have decided to start with lifestyle changes first. I really don't trust my doctor because it is clear he has never treated osteoporosis in someone so young.

JamiAnthony, what are your T-scores and do you have any fractures? I happened to discover my low bone density through a pharmacy screening. By the definition of T-scores about .6% of all 30-yr-olds have osteoporosis (that is 1 out of 160) . The only reason doctors aren't treating a lot more people our age for osteoporosis is that no one knows they have it.

Woody, where can I get a saliva test for progesterone? I've seen some online, is that something I should get through my doctor or is an online test the best way to go? How often do you recommend vitamin D testing?

JamiAnthony

Hi Bethany! My scores were -1.7 on my spine (osteopenia) and -2.9 on my hips.
They tested me when I broke my wrist. I was sitting still on a swing at the beach and when I bent over to put my shoes back on, the swing slipped and I fell into the sand. Because it was a short fall to a soft surface, and because of family history, they did the DEXA scan. I'm really not sure where to go from here.

debbie59

Do you have a rheumatologist or endocrinologist? These are the type Dr.'s you should be treated by.

JamiAnthony

I have an appointment Tuesday with an endocrinologist. Will they do any further testing on me?

bethanyb

How is your wrist healing? I was very discouraged when I first found out I had osteoporosis at such a young age. My scores are -2.6 in my spine and -1.5 in my hips. It's been about a month now and I've realized that I'm actually fortunate to have found out now instead of 10 years down the road when there was much less I could do to build bone density. I am frustrated at the lack of information on treatments for people our age. I also don't understand why they aren't routinely screening young people since it's really pretty common. Has your doctor tested you for other factors that might be causing your osteoporosis? My doctor did quite a few tests, but so far hasn't found anything. I am breastfeeding right now and I've read that can temporarily reduce bone density, so I hope I'll see some improvement as I wean my son, but I'm sure I'll still be well below normal.

Someone else on this board told me about a study going on now at Columbia for the use of forteo in premenopausal women: http://www.clinicalconnection.com/exp/ExpandedPatientViewStudy193703.aspx
I don't meet all the qualifications, but I'm looking forward to seeing results.

debbie59

Jami, My Dr. is a rheumatologist and he did more xrays on my spine and he tested my blood on my initial visit for just about everything. I know they should check your thyroid, vitamin D and calcium levels. My Dr. also checked to see if I was a smoker as my insurance company would not cover the cost of Forteo if I was a smoker. Have you just had a baby? Since you're so young and this runs in your family , I think the choice of an endocrinologist was a good one. I'm post menopausal and my Gyn. did my original scan and then sent me to a rheumatologist and research Dr. at Ohio State University. He checks my blood every 3 months.

JamiAnthony

I had my thyroid checked a year ago and it was fine. I have gained 32 pounds in the last 3 years, and I have never had a baby. My vitamin D is 47, which is good. So far, I haven't been tested for anything else.
I am not a smoker, but I did check with my insurance company to see how much Forteo was. For me, it's 200.00 every 90 days, but the total cost is 18,250 every 90 days! Unreal!! Did they end up covering you?? I have Cigna, and I'm not sure what they will do.

JamiAnthony

Bethany, it's so weird that you sent me that link. I was doing some research before I checked my email, and I emailed Halley and Shannon from that link to see if I could be a candidate for Forteo research. So far, that sounds like the best drug out there, but it's expensive! Did you email them too?

debbie59

Jami, Yes my insurance has covered all but an 18 dollar a month co-pay. I'm fortunate as forteo runs about 6 or 7 hundred a month.

bethanyb

I'm not eligible for the study right now because I'm breastfeeding, but if the study is still going on after I wean my son, I think I'll look into it. If you don't mind sharing, I would love to hear what you find out and if you decide to participate.

I'm also curious how your appointment with the endocrinologist goes. My doctor has me scheduled to have another DEXA scan in 6 months and he mentioned seeing a specialist if my density hasn't improved by then. I'm debating about asking to see one sooner to make sure there aren't some other tests I should have.

JamiAnthony

It looks like I'm in the study. I'm pretty excited. I have to stop taking my birth control pills for 2 months first. I'm so impatient, so it's going to drive me crazy!! My endo appt is tomorrow, and I'll let him read over my stuff for the study and see what he thinks. I'll let you know tomorrow night. :)

JamiAnthony

Well, it didn't go quite how I thought. Apparently, I do not have osteoporosis, even though the DEXA says I do. He says it is impossible for someone my age to have it. He said, if anything, my bones are just this way. He called it low bone minerals. He wants to take half my blood and 24 hours of urine to find another disease or issue that could cause bone loss. If he finds something, he will treat that. If there's nothing, then my bones are just this way, and that's that. I'm not going through all of that when I have no symptoms of any other problems. Guess I'll just have to take extra calcium and hope for the best. Good luck everyone!! - Jami

bethanyb

That is interesting. It sounds like good news. It's sort of the conclusion that I came to about myself, but my doctor disagrees. He took about 5 vials of blood & 72 hours of urine & didn't find anything. He says if we didn't catch it now I probably would have had a compression fracture in the next 10 years & that I should take drugs. There are other young people on here who have fractured. I wonder if they all had secondary causes?

Did the endocrinologist have anything to say about what you could expect later in life? Our bones should be at peak density now, so I assumed starting out so low would mean I have a really high risk of fractures as my density naturally declines with age. I wonder if there are older people out there with really low DEXA scores who never fracture?

JamiAnthony

I'm sure there are people out there. He didn't act like I was a greater risk for fracture. He said my fracture could have been a freak thing from falling on it just the right way. This doctor said he won't be giving me any drugs. I'm too young. Hopefully he's right and my first doctor who diagnosed it was wrong. If not, I'm in trouble in 20 year or so....

duzy

yes, please see my post ( sorry it is so long) to MamaMark discussion from August.
Good luck!

JamiAnthony

Thanks Duzy. You're right about not enough information on this disease, but I have to believe what my doctor told me. He is an endocrinologist at The Bone Heath Center. He has been a doctor almost as long as I've been alive. Why is it that he would be wrong, but there is no overwhelming proof of it? At this point, I am treating this is a misdiagnosis. When/if research proves otherwise, I will seek treatment at that time. Right now, that proof does not seem to exist. Good luck and please let me know if you find any information that could be helpful. Thanks!!

spacadet

Hi Jami,

I have a FANTASTIC endocrinologist who diagnosed me with osteoporosis on a combination of my osteopenia DEXA scores and my fracture history. The WHO definition of osteo is a T-score of -2.5 or worse, but that doesn't necessarily reflect your entire situation. Then my T-scores really did slide below -2.5 and now I'm pretty much certifiable.

I participated in the Columbia IOP study and am trying to decide whether to do the Forteo study (as a past participant in IOP, I'm fully qualified). I'm leaning towards no, even though Halley and company are fantastic people.

Osteo drugs are divided into anabolics (bone-builders - I think Forteo is the only one), and anti-resorptives (prevent bone from breaking down). In the anti-resorptive category, there are bisphosphonates, which are like Fosamax, and are probably the most-prescribed. There's the new-ish strontium drug, and the brand-new Amgen drug - and of course ALL of them are only FDA approved for post-menopausal women. But my doctor says there are plenty of other things which act as anti-resorptives - estrogen is a biggie. This is why I've been on birth control nearly my whole life, and why post-menopausal women are put on HRT. Also there's something called calcitonin, which I think is only FDA-approved for postmenopausal women, but it's not as nasty as bisphosphonates. Calcitonin is made naturally by the thyroid, and osteoclasts have receptors for calcitonin, which tells them to stop breaking down bone. I understand calcitonin is pretty weak, however. I haven't taken it, but I remember reading on here somewhere that someone had it injected during pregnancy to help heal a third trimester fracture. So that might be an option.

Traumatic fracture is when you fall from a height greater than your own (like off a ladder), or from a bad car accident. Non-traumatic or low-trauma fracture would be a better description for what happened to your wrist, I would think. This is common in osteoporosis.

Also, the shape of your bones may affect your tendency to fracture. I'm 6' tall and have long slender bones. Clearly, even if my bone density was equal to someone with "big bones", I'd fracture when they didn't, just because they have short squat bones and I don't.

Also, I don't mean to discredit your doctor, but not all old-as-dirt doctors keep up with the latest research. I had several older doctors miss my Hemochromatosis, but a doctor who looked about 12 years old diagnosed it easily from a routine blood test because he had learned about it recently in medical school. And remember, medicine can be subjective and every patient is different. My doctor said I had it at age 30, and your doctor says it doesn't exist at age 33 - and both are very experienced experts! Clearly they are interpreting similar evidence differently.

You have a fracture and you have a less-than-optimal T-score. You're concerned enough to come here and to get in touch with Columbia. Be good to yourself and don't ignore it because of what one doctor says! You really sound like the kind of person who will do the right thing and stay on top of your health. My insurance pays for DEXA scans every two years, and so I get scanned every two years. I would recommend you stay on top of this, even if you're not sure you "officially" have it. It can't hurt just to check, right!?!? Science is all about maintaining healthy skepticism to learn new things, and right now our premenopausal bodies are giant science experiments - so get the data!

spacadet

p.s. my current treatments of choice are birth control pills, calcium, vitamin D, and running.

Nancy08

Hi Jamie

Maybe you need to be tested for Vit D elevel, because there is an epidemic of vit D deficiency. Then after you get results ask the doc if you can take Vit D3 and calcium.

JamiAnthony

Nancy, my vitD is 43. That was the first thing that was checked after my scan. I do take supplements of calcium and vit D, even though my vitD is good.

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

You