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Old 03-13-2009, 05:25 PM   #1
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Only 45 and diagnosed with Osteoporosis!!

Just reaching out to see if anyone has a similar story. Was diagnosed this past week with osteoporosis and I am only 45 years old!!! I have been on Actonel for 7 years and still converted from osteopenia to osteoporosis. I was informed I also have multiple compression fractures in my spine at the thoracic level. In the past year, I have been diagnosed with leukopenia (WBC count of 2.7), hypercholesterolemia (under control with medication, but cholesterol level before was 618 and I am a vegan!!), and found out that I have a MTHFR deficiency. I have never felt bad, all of this was discovered on a routine physical and then my annual DEXA test. Anyone with a similar story? I have been to multiple doctors, but the best I can get is some kind of autoimmune disorder, but nothing in the classic diagnostic sense. I will be starting Forteo this week. Side effects bad anyone? I am really struggling with this osteoporosis diagnosis. My grandmother had it, but she was twice my age at 90!! I am being referred for a bone marrow biopsy. I have always been healthy and rarely sick. I had 2 pregnancies with no complications and 2 healthy children. I am simply stunned and stumbled on this board and thought I would give it a shot. Any information is appreciated. Thanks and I have enjoyed reading the board.

 
Old 03-13-2009, 09:33 PM   #2
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Re: Only 45 and diagnosed with Osteoporosis!!

Lack of weight bearing exercise (weight lifting, running, walking, etc.) and low intake of calcium and vitamin D may contribute to the progress of osteopenia and osteoporosis.

On the exercise front, you need to be careful to avoid damaging your now fragile bones (some of the weight bearing exercises that may stimulate bone growth against osteoporosis may cause more fractures in bones already weakened by osteoporosis), so discuss with your doctor about what exercise is appropriate for you.

A vegan diet could mean a lot of different things. Does your diet include green vegetables high in calcium, tofu made with calcium sulfate, or foods fortified with calcium? Do you get sufficient vitamin D producing sunshine exposure or consume (probably fortified) foods with vitamin D?

 
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Old 03-14-2009, 04:13 AM   #3
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Re: Only 45 and diagnosed with Osteoporosis!!

I have been active all my life. I was a competitive swimmer for 18 years and have treadmilled daily for 10 plus years. I am fortunate that I love fruit and vegetables and thought I was being careful about protein, iron, calcium, etc. I wonder if some people are not just "destined" to get osteoporosis. Not really sure about that. I will feel better when the bone marrow biopsy comes back normal. Thank you for your advice.

 
Old 03-14-2009, 08:04 AM   #4
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Re: Only 45 and diagnosed with Osteoporosis!!

While swimming is a good full body exercise in general, it does not do much against osteoporosis, since it is not weight bearing.

Also, if most of your swimming and treadmill use was done indoors, you may not have gotten much vitamin D from sunshine.

Yes, genetic considerations do play a significant role in osteoporosis.

 
Old 03-14-2009, 04:52 PM   #5
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Re: Only 45 and diagnosed with Osteoporosis!!

Hi,
I'm 55 now and found out I had osteoproisis when I was 52. I was shocked too
I was on Forteo for 15 months. The side effects that I had weren't as bad as the Fosamax side effects. On Forteo the first few days I had an upset stomach for a few hours after taking the injection, but that went away. I also had a little bone pain in my lower legs once in awhile. It really wasn't that bad. I just got so tired of giving myself a shot everyday. I was glad to get off of it.

I had another DXEA scan 15 months after starting Forteo and I got worse so the doctor took me off. I had the DEXA done on a different machine so that could be why. I started out at 3.0 and after 15 months on Forteo it was 3.3. Now I'm on Strontium, hopfully that will help.

Good luck

Britt

 
Old 03-14-2009, 08:15 PM   #6
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Re: Only 45 and diagnosed with Osteoporosis!!

Good luck to you too. I hope the new drug works for you. Do you know if it is better to inject Forteo at night or in the morning?

 
Old 03-15-2009, 10:25 AM   #7
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Re: Only 45 and diagnosed with Osteoporosis!!

I always took mine between 6 and 7 PM. I have heard it's good to take it before bed since you might sleep through the stomach upset or other side effects, if you even get any. I just found that evening worked best for me. When will you start on it?

Hope that helps.
Britt

 
Old 03-15-2009, 05:52 PM   #8
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Re: Only 45 and diagnosed with Osteoporosis!!

Hi Kentucky Girl,

I'm a Kentucky girl too, although I now live in Tennessee. Where in Kentucky are you?

Anyway, back to the matter at hand. I was diagnosed with severe osteoporosis when I was about 45, and know without a doubt that mine is inherited. I feel sure I had it long before I was 45, but just never got it checked out. There may be other contributing factors as well, but too many of my family members had/have it for it to just be coincidence. This includes my father and uncle and since it's much more prevalent in women than men, this shows just how common it is in my family.

I'm on Forteo. After about a year I had a Dexa scan which showed just a trace of improvement in my hip and a T-scores a little worse in my spine. I'm getting another Dexa scan in a couple of weeks and am very anxious to see the scores. I'm not sure what I'll do after the 2 years of Forteo is over.

I would like to try Reclast, but my insurance won't pay for it and I can't afford it on my own.

The only side effects from the Forteo was some bone pain and muscle cramps in my legs. I just learned to live with it, although it was very uncomfortable.

I recently found out I have some new compression fractures in my spine; I, too, have multiple compression fractures but don't know how many. I wear a back brace quite often (the kind with the "turtle shell") and it helps a lot. I'm so glad I have it.

I also recently found out I have scoliosis, which totally caught me off guard and surprised me. I just had an MRI on my spine and am anxious to see the results.

This probably didn't help you any, but I just wanted to respond to a fellow Kentucky Girl. Take care of yourself.
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Old 03-18-2009, 11:09 PM   #9
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Re: Only 45 and diagnosed with Osteoporosis!!

Hi Kentucky Girl… I, too, am 45 and have osteoporosis. I have been very athletic my whole life (runner and snowboarder), gotten plenty of sunshine (okay, too much growing up in Southern California), eaten a well balanced diet and added additional calcium a few years back. I have ZERO history of osteoporosis in my family anywhere. So, where does that lead? The doctors are stumped. I was recently diagnosed with Sjogrens Syndrome and Myasthenia Gravis (neither of which shed any light on the subject of osteoporosis, at least not where the doctors are concerned). There are a couple of suspicions I have, however. In my research I have uncovered a couple of interesting theories. One has to do with something called ‘gut serotonin’ (not the same as in your brain but somewhat similar). Apparently too much gut serotonin can cause osteoporosis. The other thing I have read is that if anything is throwing off the PH balance in your system, your body will leach minerals from your bones causing, guess what? Yep, osteoporosis. I am not sure what this all means in application just yet, but it seems worth pursuing. Wouldn’t it be great if it was just as simple as drinking alkaline water to restore the PH balance so our bones could keep their minerals? Food for thought.

 
Old 03-19-2009, 09:30 AM   #10
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Re: Only 45 and diagnosed with Osteoporosis!!

Hi Everyone,, was wondering if anyone has tried "Reclast" I was recently diagnosed with osteoproisis but due to stomach issues I am unable to take any of the pills, so I have been given the go ahead by insurance and doctors for the injections, but was wondering if anyone else has already been thru this process and if the side effects are as bad as I have read. I am really concernced as to weather I should do this. It's real easy for the Doctors to say "It will be fine" they are not the ones that will go thru this.. Thanks

 
Old 03-19-2009, 05:55 PM   #11
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Re: Only 45 and diagnosed with Osteoporosis!!

Quote:
Originally Posted by paprbkrtr View Post
Hi Kentucky Girl,

I'm a Kentucky girl too, although I now live in Tennessee. Where in Kentucky are you?

Anyway, back to the matter at hand. I was diagnosed with severe osteoporosis when I was about 45, and know without a doubt that mine is inherited. I feel sure I had it long before I was 45, but just never got it checked out. There may be other contributing factors as well, but too many of my family members had/have it for it to just be coincidence. This includes my father and uncle and since it's much more prevalent in women than men, this shows just how common it is in my family.

I'm on Forteo. After about a year I had a Dexa scan which showed just a trace of improvement in my hip and a T-scores a little worse in my spine. I'm getting another Dexa scan in a couple of weeks and am very anxious to see the scores. I'm not sure what I'll do after the 2 years of Forteo is over.

I would like to try Reclast, but my insurance won't pay for it and I can't afford it on my own.

The only side effects from the Forteo was some bone pain and muscle cramps in my legs. I just learned to live with it, although it was very uncomfortable.

I recently found out I have some new compression fractures in my spine; I, too, have multiple compression fractures but don't know how many. I wear a back brace quite often (the kind with the "turtle shell") and it helps a lot. I'm so glad I have it.

I also recently found out I have scoliosis, which totally caught me off guard and surprised me. I just had an MRI on my spine and am anxious to see the results.

This probably didn't help you any, but I just wanted to respond to a fellow Kentucky Girl. Take care of yourself.
Hey Tennessee Transplant. I am in the Western Part of Kentucky near Land Between the Lakes. My spine series showed adult onset scoliosis with a shift to the right. The shift is where the compression fractures are the highest in number. Just took my third shot of Forteo. No side effects yet. VERY PLEASED with my insurance. I only have a $20 copay and they Fed Ex everything to my house in a nice little cooler packed with cooler packs. Needles, everything included.

I have several issues going on. White Blood count of 2.0, no iron. I eat very healthy and take a variety of vitamins daily. I did agree this week to the bone marrow biopsy and will do that on the 10th of April. I am also MTHFR Deficient. I never knew it because I have never had any issues with blood clots, etc. My father did and died rather young of a pulmonary embolism. Probably where I inherited this great genetic hand from. My grandmother had osteoporosis. However, she was a cute, little 90 year old lady. She was not 45 (and young in my opinion.....Ha!) like me. I am still trying to get my head around all of this. My plan is to stay positive and do what I can to recover what bone loss I have had and live a good life. No more water skiing for now......maybe after my two years of Forteo are up though!!!

What part of the inferior Volunteer State did you move to?

 
Old 03-20-2009, 02:17 PM   #12
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Re: Only 45 and diagnosed with Osteoporosis!!

Quote:
What part of the inferior Volunteer State did you move to?
Hi, Kentucky Girl ~~

I'm in Nashville, and Tennessee's not a bad place to live. My heart will always be in the Bluegrass though..... I was born in Lexington but moved to Louisville when I was 10.

I don't think you'll have any trouble giving yourself the Forteo injections and hope you don't have any side effects. I don't know what I'll take when my 2 years are up, but right now, just want to see the results from next week's Dexa scan.

What are your T-scores?

Are you seeing an Endocrinologist? I am, but don't seem to be getting much from her, to be honest. I don't know what else she can do, really, but it seems like I'm just "out there" on my own to figure all this out. When I mentioned osteonecrosis from the Forteo she just dismissed it. Likewise with my concern over taking bisphosphonates. I like to think she's invested in my health, but am not convinced.

Keep in touch and let us know how you progress.




Kentucky Girl, you mentioned your Grandmother having osteoporosis. My Grandmother (Winchester, Kentucky) had osteoporosis so bad that she spent the last 10 years of her life confined to bed in a nursing home. She was healthy otherwise, and mentally she was sharp as a tack, but she was terribly fragile from this disease. I don't like the idea of me ending up in a nursing home for the same reason, but it wouldn't surprise me one bit. Good for your 90-year-old Mamow!
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Last edited by paprbkrtr; 03-20-2009 at 02:21 PM. Reason: Edited to add mention of my Grandmother.

 
Old 03-20-2009, 05:32 PM   #13
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Re: Only 45 and diagnosed with Osteoporosis!!

Kentucky Girl,
Did your doctor say if the Forteo was supposed to heal the fractures or not? I posted a question about this but no one answered. I don't see my doctor for another 10 days but was just curious.

 
Old 03-20-2009, 06:15 PM   #14
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Re: Only 45 and diagnosed with Osteoporosis!!

Yes, that is what he said and that is what I am counting on. I am suppose to take 1200 mg. calcium plus D a day with it. Just did my 4th shot, only 727 to go!!!!!

 
Old 03-20-2009, 06:23 PM   #15
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Re: Only 45 and diagnosed with Osteoporosis!!

I totally understand the "out there on your own". You have to do a lot of leg work on your own. I see an oncologist for a white count that is hideously low. I also have cholesterol that has gone through the roof and hard to control on medication. Now I have the osteoporosis. All three of these things have happened in the last 11 months. They have to be related. I have thee different doctors. Nobody wants to touch something that is not their "specialty". My research has led me to think that I need to see a Rheumotologist. I am so sick of doctors. I spent my first 44 years rarely having a cold to this. I want that magic fix, but also know that is probably not out there.

My grandmother was 88 when she was diagnosed with osteoporosis and had that "turtle" look. She was so stooped. I hope that does not happen to me. I think that maybe we are lucky in some ways. We have the diagnosis and can work on fixing the bone loss. I know for sure................I will never take health for granted again.

Nashville is a good city. I have a sister there and spend a good deal of time there. My daughter does competitive cheerleading and a lot of the competitions are there. As a matter of fact, this weekend is one at Municipal.

Take care.

 
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