Meds for Premenopausal Osteo & Other Qs

Hello all,
After about 8 months of hip pain I went to my doctor and found out that I have osteoporosis (I have also had osteoarthritis since high school). This was quite the shock to my husband and me. I am seeing a specialist in November but in the meantime there are a few things that worry me and I am wondering if you all may have some input on from your experiences:

1. Do you know of negative effects for taking osteoporosis medication that is formulated for postmenopause as a premenapausal woman?

2. What about osteoporosis causes the bone pain?

3. How much bone density can you actually re-build with calcium, vit-D, and meds? Is there an average percentage that it can increase? My primary physician says I can't rebuild much and can only lose density at this point.

4. Has anyone been diagnosed before having children? I am worried about complications - before reading this board I hadn't even thought about the fact that pregnancy takes more calcium out of you ... and then there is the stress of more weight on my bones that worries me as well. I have to be very conscious of my weight all the time. Putting on five pounds makes a significant difference in my ability to function between the arthritis and the osteoporosis.

These are all questions I will be asking my doctor but I am always interested to learn from the experiences of others as well. Thanks for your help.

By pgreene
Posted October 26, 2007 at 1:05 pm
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Hi, Doyle. I was diagnosed at the age of 33 with osteoporosis. I have been on Fosamax for 11 years and have not had any problems taking the medication even though it has only been tested for postmenopausal women. My scores went from -2.5 to -1.2 in the hip.

I had children before I was diagnosed but the youngest was 3 when I was diagnosed so it's possible I had osteoporosis while I was pregnant.

I had gone to an orthopedic surgeon for severe DDD of my lumbar spine when I was 33. I had a spinal fusion when I was 12 which added extra wear and tear to the only vertebrae that weren't fused - L4 and L5. I questioned the doctor as to how much calcium I should be taking to prevent osteoporosis. He said, "Prevent it? You already have it!" If I hadn't of asked that question who knows how long I would have gone before it would have been diagnosed.

Please feel free to ask any questions you have.

Peggy

By nettie
Posted October 27, 2007 at 7:38 am
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Good morning,

I don't know if this well answer any of your questions but I'm 43 years old and have severe Osteo, and I'm not on any medication and haven't been for many years. I have tried them but they don't work for me because I have intestinal problems. What I do is exercise a lot and my bone density went up 6 points in five years? I'm not sure if it a big improvement and it never really bothered me until the pain seems to be getting worse, so I have increased the exercises that I do. I have found that water is the best exercise because it removes the inpact that you would be putting on your bones.

I also think it would be fair to let you know that I'm a fitness instructor and I teach people with body injuries how to exercise safely. if you can join a water class and your not afraid of deep water put a belt on and go in the deep water and exercise, you should feel a difference within a few weeks.

Have a great day

By MaryMc
Posted October 29, 2007 at 12:08 am
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Hi Doyle,

As I understand it, the osteoporosis meds such as Fosamax and Actonel are labeled for use by post-menopausal women, because that's the population that was studied when the drug was tested. However, off-label use, such as for women who are not menopausal, is at the doctor's discretion. Off-label perscriptions happen all the time, and it's nothing to worry about. I was diagnosed at age 40 with severe (T-score -3) in my lower lumbar and -2.5 in my hips. After 7 years on Fosamax my spine T-score is -1.6, and my hips are -0.6. Needless to say, I'm very pleased with this result and am so happy that my doctor had me tested at such a young age, and that she prescribed the drugs.

I had had lower back pain all through my 30s, to the point I couldn't pick anything up. It was horrible. I finally realized that I needed to get on an exercise program where I both strengthened my core and stretched it (duh!). I figure this out before I was diagnosed and began the Fosamax. Exercising has completely made my back pain go away.

I would urge you, to the best of your ability, to get on an exercise program not only to stretch and strengthen your body's core, but to do weight bearing exercises. Water aerobics and ride bikes are not weight bearing exercises, so I avoid them, even though I love riding bikes. I do step aerobics and kick-boxing, and walk and hike as much as possible.

Good luck!

MaryMc

By nettie
Posted November 2, 2007 at 5:38 am
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Hello,
Good morning and hope all is well with everyone, I just wanted to say that before you being any exercise you should discuss it with your doctor because my bone doctor say the only thing he wants my to do is walk and be in the water. He doesn't even want to to lift any weight at all especailly free weights, but we know that weight bearing is very important and water aeborics that I teach does use two different types of weights just so we do have weight bearing exercise, so I would strongly suggest that you speak to the instructor on what equipment they use, and how is the program designed to help for you.

Thanks for listening
Lynn

By ashfordavon
Posted November 4, 2007 at 7:52 am
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Hello Doyle,

I too was recently diagnosed with osteopenia and osterporosis of the hip caused by Depoprovera injections for the past 4 years. My OB-GYN has taken me off of the Depo but did not suggest any treatment. She said that I had to wait until I was menopausal to begin any treatment and this doesn't seem right to me. And although I don't have bone pain, I have noticed over the past few years that if I stay in bed too long, my hips do ache.

Would you please let me know what kind of specialist you will be seeing this month and what his suggestions are for treatment?

Best wishes to you!

Cheryl

By pgreene
Posted November 4, 2007 at 12:37 pm
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Cheryl,
Treatments for menopausal women can also be used for premenopausal women, they just haven't been researched on us. I have been on Fosamax for 11 years now, almost 12, and started when I was 33. You need to see an endocrinologist or rheumatologist or find another doctor that will treat you. For the most part the treatments will work on us premenopausal women as well.

Peggy

By minihorseowner
Posted November 16, 2007 at 10:13 pm
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Hi, I too am very young with osteoporosis. We live close by to each other.
You must go to see Dr. Susan Bukata at University Orthopedics Osteoporosis
Center. She is THE BEST when it comes to treating and understanding
Osteoporosis! She knows what works and is actively involved in new treatments
and figuring out what is going on. Email me and I can give you more info.

By MaryCampbellCa
Posted December 1, 2007 at 7:15 pm
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I understand that water exercise is comfortable; but know that if it isn't weight - bearing exercise it won't have any positive effect on building bone mass......
(so I've been told)

By Kelley1
Posted January 24, 2008 at 2:00 pm
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I've read all the comments re: Meds for premen. women. Am glad meds have worked for those of you that have been on them. For me, Fosamax was prescribed when I was 40 and I stayed on them 2 years, had side effects in the beginning and my DEXA scans did not improve, they actually got slightly worse. I, too, am in the medical profession and was very concerned about my taking a drug that was only tested for postmenopausal women. I choose to get off b/c it was doing me no good at all. And, although I am still premenopausal, I've been getting my daily CA++/Vit. D through my food sources and exercising (albeit, I've been sidelined from exercise due to a knee injury in Aug. '07 and had surgery in Oct.) My T-score continues to decline and is now at -3.8. Obviously, I'm very concerned about this. I have found water therapy to be very helpful for me as well (I also have osteoarthritis) and have had to resort to this style of exercise since my knee injury. I sure appreciate reading all the comments about premenopausal women and their bone health. Sure wish OPRAH would have a show about this to educate the public that osteoporosis IS NOT just a disease of the elderly female population.

By jerryd3001
Posted January 25, 2008 at 9:34 am
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Kelley,

I just want to let readers realize that you appear to be self-medicating a very serious medical condition, which is a questionable concept IMHO. If you fall, for instance, you are about eight times more likely to have a fracture than a person with a normal T-score. Here is a reference:

"According to WHO criteria patients with scores of -1 or greater are considered to be within the normal range. T-scores of -1 to -2.5 indicate osteopenia, -2.5 or less defines osteoporosis and -2.5 or less with at least 1 fracture indicates severe osteoporosis. A T-score of -1 represents a 10% to 12% loss of bone mass compared with the mean in normal young adults, which increases the relative risk of fracture 1.5 to 2-fold.” J Urol. 2007 Jan;177(1):17-24. Bone health in men receiving androgen deprivation therapy for prostate cancer, Eastham, JA. PMID: 17161994.

Studies have shown two important items that you might not be aware of:
1. T-scores tend to regress to the mean when on osteoporosis medications. That is, if you don't initially show much improvement when taking, e.g., Fosamax, that will later be expected to show considerable improvement to make you "regress to the mean." That is, to get the improvement that others in a large population would get. Likewise, if you had a huge initial improvement in bone density, you would expect that to be much less in later years to also get you back to the mean.
2. Fracture risk improvement doesn't directly correlate to T-score improvement. That is, even though your DXA might not have shown a significant improvement, you were almost certainly less likely to fracture since there are qualitative improvements in bone that reduce fracture risk and don't show up on DXA scans when individuals take bisphosphonates such as Fosamax.

It would be wonderful if all we had to do was take supplemental calcium and vitamin D to treat osteoporosis, unfortunately, it doesn't work that way. You, in fact, reinforce that as you explain that your osteoporosis continues to worsen even though you are taking calcium and vitamin D.

There are at least two IV medications out there now, and Forteo is an injection, so all these would bypass the gut, which would be the likely culprit if you aren't improving adequately on oral medications. I'd suggest you discuss any of the injectable osteoporosis medications with a medical specialist who treats osteoporosis. Speaking from experience I can tell you that preventing a fracture is preferable to treating it after the fact.

Good luck.

By T1
Posted February 4, 2008 at 10:57 pm
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"4. Has anyone been diagnosed before having children? I am worried about complications - before reading this board I hadn't even thought about the fact that pregnancy takes more calcium out of you ... and then there is the stress of more weight on my bones that worries me as well. I have to be very conscious of my weight all the time. Putting on five pounds makes a significant difference in my ability to function between the arthritis and the osteoporosis."

I am 31 years old and am 34 weeks pregnant with my second child. My osteoporosis was diagnosed several years before I became pregnant with my first (born 12/2004), and it is my understanding that if you get enough calcium, both through supplements and diet, your bone density will more or less stay the same during pregnancy.

Nursing, however, will practically suck the marrow from your bones! I nursed my son exclusively for six months and have gotten permission from my OB and endo to nurse this baby for 3-6, under the condition that I not resume jogging or participate in any high-risk activities until after I've weaned the baby.

Most importantly, do not take any prescription medicines to treat your osteoporosis until you are sure you're finished having children. I've received this advice from two leaders in the field of endocrinology, as well as my OB. These are serious medicines and while, yes, they are OK to use in prememopausal women even though they haven't been studied in this population, there's no information on what impact taking these medicines could have on a developing fetus, even months after you've stopped taking the medicines. It's just not worth the risk.

Good luck!

By scottb56
Posted April 6, 2009 at 9:28 pm
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I am a male age 52 and was diagnosed with t scores of -3.8 for my lumbar and -4 for my hips. I went on Fosomax but headaches caused me to stop. I tried Boniva, but also got headaches from that too. I was told that if I could withstand taking the medicine I could expect a 10% improvement "over the years". I experienced a 16% improvement in my spine and a 10% improvement in my hips in 14 months WITHOUT MEDICATION! After much research I began the following exercise regimen which I maintain. Walk 3.6 miles at 120 steps/minute 6 days/week. Strength Train weights/machines/balance/core 2 days/week. Take 4-5 Iyengar Yoga Classes weekly. My doctor was quite pleased with my improvement and keeping up this regimen should bring further improvement. I guess the "tell your body you need it" theory can work if you take the time to do so.

By KG
Posted April 7, 2009 at 7:54 am
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I second what T1 said, it's VERY important:

"Most importantly, do not take any prescription medicines to treat your osteoporosis until you are sure you're finished having children. I've received this advice from two leaders in the field of endocrinology, as well as my OB. These are serious medicines and while, yes, they are OK to use in prememopausal women even though they haven't been studied in this population, there's no information on what impact taking these medicines could have on a developing fetus, even months after you've stopped taking the medicines. It's just not worth the risk."

By Loods
Posted April 8, 2009 at 10:26 am
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Personally I would urge any women pre or post menopausal to try natural alternatives to the medications currently on offer.

These are very powerful drugs and I believe at some point in the future they will be taken off the market as being unsafe.

Unfortunately many people, myself included, are scared into taking medication but if this medication is so good why is there so many different types on the market. Is it because none of it actually works that well but it is still all being trialled? We are the guinea pigs of today - yet we deserve better than that!

By really
Posted April 8, 2009 at 10:55 am
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I had hysterectomy at age 27. I had what should have been a simple fall in 2006, that turned into severe trauma injury. Docs, nurses, physical therapist, all thought I had oestroposis due to the severity. I finally got tested and do have severe oestroposis. I tried taking actenol and it was a nightmare. I still have severe bone, nerve, muscle pain from the fall, but this medicine really crippled me from the pain. I will not take any of the meds that list pain as a side effect. Doc said having such severe pain from actenol, the likelihood of having same reaction from another oestro drug is very likely.
Right now my only option is to take Calcium and D. But the more I read about oestro drugs, the more I don't think any of them are safe. I think each person has to weigh risks to their individual circumstances.

By mrsblythen
Posted April 27, 2009 at 3:50 am
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hi. i dont have and children and im only just turned 27. i have a score of -3.5 lumbar and -2.4 hips. all i have been given is calcium and d3 tablets. im still waiting for my blood results to determin how it got so bad so early. i got really depressed over it and didnt realize how bad i got. i thought i was being positive but in my head i was falling apart. i think everyone is diffrent and need to find there own way of making things better. no 2 stories on here are the same but seems like everyone had the same advice. makes no sence to me. just stay safe exercize and stay happy. do something that makes ya smile or laugh everyday. worked for me. x

By Doyle0515
Posted April 27, 2009 at 7:05 am
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it feels like a lifetime since I wrote that post in 2007 - since then I have been taking calcium regularly, exercising, and I have had some major life changes which brought me out of a very long bought with depression. Since making all of these changes I can honestly say I feel like I am perfectly normal - no pain in my hips, my back only flares up when I stop exercising or over do it, and I have more energy than I ever thought I would. It's like a new lease on life. Oh --- and I never took any of the prescription meds.

By YoungMum88
Posted April 27, 2009 at 6:30 pm
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Hi doyle, i am 21 with osteopososis diagnosed after my son was born. I also looked into meds but have been put off by the side effects i read about but mainly because the research has not been done.
I would urge you to try and help your bones naturally first, im sure it wont be as fast, but it will be much better for you. Currently i go to the gym 3 times a week and do a gentle weights session that a personally trainer designed for me.
It has been 6 months since i was diagnosed with osteo and 6 fractures in my spine. Some days i think ill never recover but then i look back how far ive come. 6 months ago i was on an enormous amount of pain killers (enough to knock out a horse!) and in a wheel chair. Now i can basically do everything, still in quite bit of pain and lose energy very quickly but it does get better. Im sure the pain is from my fractures as they say you shouldnt get too much from the actual disease.

By Kinjul
Posted May 19, 2009 at 10:56 pm
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Osteoporosis can be caused by celiac disease, which is an autoimmune disease that creates malabsorption and requires a 100% gluten free diet. Be sure to request the blood test and continue to eat gluten until all testing is done. I had a bone density scan b/c I was diagnosed with celiac 2 1/2 years ago. I am 34 and got report today saying I have osteoporosis (3 scores around -2.5) and 2 scores in osteopenia range. What type of specialist is best to see?

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