So i had to get my complete Bone density study the other day to send to the new endocrinologist because she could tell by looking at the only info i was given was inappropriate for someone my age. I got a disk with all my in for the other day and loaded in my computer to download and email to the endo never bothering to read any of the info because assumed i wouldn't understand it anyway. . So i sent it to her nurse and forgot about it. Tonight i checked my email an saw a delivery confirmation from the endos office with my original file attached open on my complete T score info. My left dual femur is -2.7 osteoporosis the rest or the results are all osteopina as my original info said. .. im so said nothing is stoping my bones from thining! Now im have to be on fosamax even though im still menstruating and that can cause so many issues :/ im really scared for my 16year old daughter because her grandmother and now mother at a very young age have osteoporosis. .. im just so sad
I'm sorry, Dawn Celeste. You have been given a hard load to haul in your short life. I know that people with fibro have very low levels of Vitamin D3 and I'm presuming that people with lupus must too. It almost seems as if the area in our bodies where the Vitamin D3 is supposed to be delivered is missing the receptor prongs, so the D3 doesn't ever attach to the proper site and just slips on through our systems.
I so wish there were other treatments available to you! Sometimes life really does hand you lemons and you have to make lemon aide with them.
You are in my thoughts. I hope that some other option will become available to you.
Very gentle hugs,
Petunia
I’m not in your shoes so I don’t really know how you feel. But please stay strong especially for you and for your daughter. Feeling/being down is only going to add to the stress and the burden for your body and mind to deal with.
Hi
I was on Fosamax for a few years and then got a yearly infusion. Maybe that would be an option for you???
Cindy
I have mixed feelings about Fosamax and drugs like them. But perhaps it is for the best. I do feel strongly about eating well and getting in exercise when possible. These are things, sadly, our doctors won’t tell us. After doing a lot of reading, I’m not a huge fan of eating large amounts of dairy,since studies show those countries where the woman eat the most dairy have biggest osteoporosis problems. Some dairy and lots of green veggies and other good foods seem best. Of course our problems seem to be largely related to taking steriods. Anyway, D3 is super important and you can take much larger dosages than many doctors realize. I take 4000 units per day. There is a supplement called Bone Up three a day that is very good. However, I only take two a day since I already take a lot of D and there is calcium in my multi too. I was showing osteopenia and this slowed it down a bit for me. BTW, vitamin K is in my multi and in this other supplement (Bone up) and I read a book from the library on osteoporosis and it said how vitamin K was the newest suppliment discovered to help prevent osteo. and my rheumatologist hadn’t heard that. Do your own research on this. I suspect that there is much we can do to help ourselves, much we can do to slow this down. Also, try to avoid steriods, especially large dosages. BTW, the super cool thing about taking extra vitamin D for me is that along with Fish oil and a B complex, is it lifts my spirits! This is crummy news, but although easier said than done, try not to let it get you down.
Ask if Forteo would be appropriate for you. Google it. From what I read it can used temporarily to help regain bone growth.
I have severe osteoporosis. I started forteo a year ago. You’re suppose to take it daily but I can only handle it every other day. I pray it works as my scores are -3.7. And I already broke my hip and T7. I’m 54.
Hello, sorry to hear that you are going through this moment. Dealing with immune disorders cause so many problems one after another. Hang in there and stay as positive as possible ...Beverly L.
So sorry… kale and broccoli actually have the most calcium not milk. Hang in there
Almond milk also has 50% more calcium than milk and is easy to digest.
Hi. I am 29 years old and developed severe osteoperosis everywhere when I was 28 most likley from the prednisone. I flew out to New York to see a bone specialist at the Hospital for Special Surgery and he recommended Forteo. I had tried other things like Fosamax and Boniva with no luck. I have been on the Forteo for a year now and my bone density has finally started to improve. You so have to inject yourself with the medication everyday which sucks but the results are so worth it! I was breaking bones every month before I went on it. It is made for people with osteoporosis due to steroid use!
Thanksfor the support everyone! Unfortunately my osteoporosis is not due to prednisone.. my dr figured out very quickly that i had to skip to immunosuppressives over prednisone therpy because it just wasn't enough to control my diseases. ..there still not under control :/ my mom has severe osteoporosis she's totally hunched over, at least 2 inches shorter. My main disease is relapsing polycondritus its a rare disease of the cartilage but it affects the bones too. .so between that and the overlaping lupus my joints, bones and cartilage are disappearing at an alarming rate. . The life span for polycondritus is not great 5 to 10 years, its less when vasculits and kidney issues are involved. I have hematological ,lung, live and pancreas involvement so its an up hill battle. I really am trying to stay positive but it is impossible not to get a little sad or discouraged with thesd odds aginst me not to mention the excruciating pain that comes with all of the cartilage, joint and bone deterioration. . Its hard but it could always be worse. . I went yesterday to visit my good friend in hospice dying of ALS ... it could always be worse!
Hi, it made me want to cry when I read this post. It is very sad and unfortunate =( I will keep you in my prayer.
I was diagnosed with it some time long ago, in my early 40’s, probably from prednisone, and my rheumatologist has treated it really aggressively, for which I am now grateful. I get prolia shots every 6 months. Fosamax and related drugs gave me horrible stomach problems. I was dehydrated and passed out a couple of years ago. I only broke my tailbone, after landing on a heavy ceramic cat statue’s ear with that bit of my anatomy. Might have broken it without osteoporosis. I am sorry to hear your story, it is not happy news for you in any way. They are working hard on new treatments, and they will have even better treatments when your daughter is your age.