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Old 07-10-2006, 03:30 PM   #1
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osteoporosis, 26, pregnancy?

Hi,

I'm brand new to this website.

I was diagnosed with osteoporosis 2 years ago (when I was 24) after taking steroids for 2 years for another illness. I feel quite alone with it (even though I have friends and family around me) none of them understand what its like to have osteoporosis. When I had my first (and only) Dexa scan 2 years ago I was told my osteoporosis was only slight, and as I had finished the steroid treatment there was a chance the osteoporosis could be reversed. I was put on alendronic acid (10mg a day) and also calcium and vitamin D tablets. I've had pain in my legs for a few years now but recently the pain seems to be getting worse and worse. I really want to have children one day, but I don't even know if thats possible with 'slight' osteoporosis. I've been looking on websites this evening about taking alendronic acid during pregnancy or just stopping taking it during pregnancy, but haven't found any real conclusion. Doctors have also given me conflicting advice. Does anybody know? has anyone gone through a pregnancy whilst having osteoporosis?
Any advice would be greatly appreciated x

 
Old 07-11-2006, 03:44 AM   #2
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Re: osteoporosis, 26, pregnancy?

K3,

It sounds as if someone has scared the wits out of you. Do you know your osteo numbers? Could they have meant Osteopenia, not Osteoporosis? Why were you given steroids? Osteoporosis is not usually associated with pain so it is likely the pain you speak of is from something you are taking or your previous condition. I am not familar with alendronic, but if it is a biophosphate that could likely be the culprit. My feeling is that many times doctors medicate unnecessarily. I encourage you to read the book The Myth Of Osteoporosis Also, post your dexa numbers here where there are some very knowledgeable people who can help you accurately interpret them. Lastly, you are young and I see no reason why you couldn't have a normal pregnancy, at least in terms of possibly having some bone loss, which you can probably easily reverse with weight-bearing exercise and some supplementation.

All the best!

 
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Old 07-11-2006, 01:06 PM   #3
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Re: osteoporosis, 26, pregnancy?

Thanks for the reply.

I was never told my dexa numbers. I live in the UK (don't know if any of you do) where doctors are not very forthcoming with information. The condition I had the steroids for is called Dermatomyositis. It is a fairly rare autoimmune illness (has similarities to Lupus) where your immune system attacks your skin and muscles. It was quite a debilatating illness when it was active, but now it is 'doormant' and therefore doesn't need treating for the moment. I've been told by my specialist that it could reccur at any time again or I may never get it again in my life. When I finished the treatment my specialist sent me for a Dexa scan to be on the safe side. I have been told 2 different things. The specialist for my Dermatomyositis told me that I had 'slight osteoporosis' and that after 3 years of treatment with the alendronic acid I would have a repeat Dexa scan and there was a strong possibility the osteoporosis could be reversed. My GP (when giving me my repeat prescription) told me that I had osteoporosis and would be on medication for the rest of my life! I have never been given my Dexa numbers. I don't know whether any of you are UK based but the NHS isn't great on giving you facts!

 
Old 07-11-2006, 09:49 PM   #4
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Re: osteoporosis, 26, pregnancy?

Doesn't the UK have a process in place for requesting copies of your medical records? I would find out and make a request so you know the outcome of the test and have it in your hand.

 
Old 07-12-2006, 05:37 AM   #5
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Re: osteoporosis, 26, pregnancy?

I am also from the UK - I think alendronic acid is a bisphosphonate. I was diagnosed just after Xmas this year with osteoporosis but am much older than you are and there is a family history and I have been put on Foxamax (also a bisphosphonate) which I am not entirely happy about but so far no side-effects. You should have a copy of your results - mine were posted to me and to my GP. Did you have to pay for your dexa scan - I had to so as I was a private patient(no choice) I was automatically sent a copy of the results. Your GP must have a copy of the results so I would go and ask for a print out at your surgery. In view of your age I would certainly look at other alternatives (especially if your results are borderline osteoporosis) - at your age you should be able to build bone with vitamins and exercise (are you able to exercise much with the other condition). Have you thought of seeing a herbalist or something like that? The NHS seems to be on a one track with regards to treatment of osteoporosis and bisphonates are the first line of treatment and I have been back several times to ask for another treatment but no luck so I will wait for my next scan. I don't think your GP should be telling you that you have to have treatment for the rest of your life at your age - if I were you I'd get the results and look for second opinion from another GP. Have you tried contacted the National Osteoporosis Society in Bath. Good luck - keep us posted

 
Old 07-12-2006, 02:06 PM   #6
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Re: osteoporosis, 26, pregnancy?

Thanks for your replies.

Yes the alendronic acid is a biphosphonate. I was on fosamax for the first year after I was diagnosed, but the doctor changed my prescription without notifying me to alendronic acid. I asked the pharmacist about it and he said it is the same thing, just a different company makes it. They are small round tablets as opposed to long ones like the fosamax. I had the DEXA scan done through the NHS, because it was a precaution after taking the steroids for 2 years, I was never given the results as numbers, just the statement 'you have osteoporosis'. I've read on a few websites that DEXA scans at the age I was when I had it (24) are usually inconclusive anyway because total bone formation isn't complete until you are between the ages of 25 and 30. Is this true? If so, I don't understand why I was put on medication.

I asked my dermatomyositis specialist in March if I could have another DEXA scan now as I wasn't really happy taking the medication, and also as I haven't had to take the steroids for 2 years (and it was them that had caused it) I wanted to see if any of the damage had been reversed. She said no and that I had to wait another year. My dermatomyositis is completely doormant at the moment. So for the time being at least i'm as active as any other 26 year old apart from the pains I get in my legs. I just feel trapped being on the medication. Although i'm 26 I feel like my life is passing me by. I know people have children later on in life these days, but seen as I have this 'slight' osteoporosis I'm not sure whether that would be a great idea for me. Plus I know that you slouldn't get pregnant whilst taking the alendronic acid. The longer I'm stuck on this stupid medication the less likely it is i'll have a family of my own.

Sorry if I'm not making sense. I just feel so unhappy and trapped at the moment. I don't know why in the past couple of weeks i've began to feel like this. I'm usually fairly upbeat about things, all of the things i've been through medically i've just accepted and got on with.

I think you are right, I should ask for my 'numbers'. I guess I should have when I was diagnosed, but in all honesty I didn't think I would have it and therefore didn't look into what form my results would take. It wasn't until I was diagnosed and I came home and looked on the internet that I realised I should have been given numbers to let me know the severity (or not) of the condition. I guess part of me is scared to know, but that part of me is probably leading me to believe the situation is a lot worse than it probably is.

I've been told by my doctor that I should do 'weight-bearing' exercise. When I asked my doctor what exercise constitutes 'weight-bearing' I was just told walking, squash etc. I walk a lot as I don't drive. I'm not in to sports like squash. What other exercise is classed as 'weight-bearing'?.

Thanks for listening,

Thanks for you replies x

 
Old 07-31-2006, 03:50 PM   #7
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Exclamation Re: osteoporosis, 26, pregnancy?

Hi I am new to this site to.

Regarding the lady who wants to get pregnant, even thoug she is diagnosed with osteoporosis, I have one very interesting question for you.

Are you sure you dont have a disease called hyperparathyroidsime. I had this disease and because of it developed osteoporosis. But today I am recovering from the hyperparathyroidisme after surgery. I am 35 years old. And did have this disease during my pregnancy, it was really terrible alot of pain. If you have this disease please get it fixed, and then you can have a baby I whish you all the best of luck

 
Old 11-18-2006, 02:10 AM   #8
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Red face Re: osteoporosis, 26, pregnancy?

Hi all,
I just found this site today, as I was diagnosed with osteoporosis today.
I'm 25, just got married too. Never been sick in my life, never been on any type of medication, and now this. I'm a little dumbfounded and shocked, as I have no idea how I could be. I am seeing a specialist in a few days time, so hopefully they can shed some light.
At the moment, I'm a little "lost".

 
Old 11-18-2006, 08:47 AM   #9
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Re: osteoporosis, 26, pregnancy?

Hi All: Alendronate or Alendronic Acid, is the chemical name for Fosamax... I don't see any reason why you couldn't get pregnant as long as you are taking the meds you need to, to fight the osteo. Below is a link that explains t-scores, and I would find out what your's are before I worry too much. Osteoporosis is treatable!! However, you would most likely have to stop the alendronic acid during pregnacy. I do know of people with osteo that got pregnant and didn't have any probs, but you'll need to know about how much weight you can lift and some other issues.

Could you contact the lab that did the dexa and ask for the results of your test, if your doc won't give it to you? In the UK don't they have patient advocacy programs that gives you legal rights to your test results, I think it would be worth looking into. In the U.S. most docs are always worried about malpractice suits, so if they withhold info they "could" be subject to that which of course they don't want, so it's much easier to give the patient what is legally theirs.

Young people get osteo too, from different things generally but just the same they do. Cortisone, eating disorders, certain birth control can bring it on, there is also a juvenile version of osteo, but I don't know what causes that. Also check the link below to make sure your score isn't in the Osteopenia area, because if it is, this is NOT a disease but a warning sign that you have thinning bones, and to take precautions to prevent Osteoporosis. Osteoporosis is any score worse than -2.5

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

If you want to read about this go to the National Osteoporosis Foundation, or Foundation for Osteo Research and Education, The World Health Org and read up on this subject.

Good luck all of you, and if you have anymore questions don't hesitate to ask.

Last edited by DesertBloom; 11-18-2006 at 12:35 PM.

 
Old 11-27-2006, 04:13 PM   #10
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Re: osteoporosis, 26, pregnancy?

I am 26 years old and have osteoporsis. I am also wanting to have children within the nest year or so. I have spoken to my doctor and really the only safe medicine to be on is forteo or miacalcin, these meds can get out of your system quicker than anyother. I am currently doing the nasal spray miacalcin, because I have to be on something, but I don't trust what the other meds can be doing to my body, since there is really no known causes with someone who has not gone through menopause. I would be very interested to hear what else your doctors have to say.

 
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