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Old 03-08-2013, 11:47 AM   #16
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Re: 25 years old just diagnosed with osteoporosis

That is what I am hoping to do without Fosamax for now, at least untill I have another scan in 2 years to see if I'm still losing bone or managed to gain density. Although I do start to panic when I hear stories of vertebrae compression so it is very good to be able to see other peoples opinions!

Right now I am leaning towards saying no to fosamax for the time being.

 
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Old 03-08-2013, 08:47 PM   #17
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Re: 25 years old just diagnosed with osteoporosis

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That is what I am hoping to do without Fosamax for now, at least untill I have another scan in 2 years to see if I'm still losing bone or managed to gain density. Although I do start to panic when I hear stories of vertebrae compression so it is very good to be able to see other peoples opinions!

Right now I am leaning towards saying no to fosamax for the time being.
I know what you mean about panicking. I think it would be nice to find a doctor to confirm what ever we ourselves believe to be right. Have you seen a good endocrinologist? I had seen a highly recommended one before I went into menopause and he had told me not to take any drugs until after menopause. That seemed to make sense to me.

 
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Old 03-08-2013, 09:35 PM   #18
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Re: 25 years old just diagnosed with osteoporosis

I was very happy with him during the consultation, but am starting to wonder now that I have done more research myself! I had planned on going in more informed, but was notified of a cancelled appointment allowing mine to be bumped forward a few weeks which I jumped to get. He was recommended by my team's sports doctor who is the best in the country in sports medicine so I trusted his recommendation. I am now wondering if I should see someone with a more holistic approach, though I spent a lot of money to see this endo privately already.

I think I will discuss it with him when I next see him in a month or so, or send him an email with my concerns. He seems very relaxed and open to my thoughts and ideas. I was relieved when he didn't restrict the things I love to do like running, rowing and cycling.

He did say I was very lucky with the broken ribs as a give away to have even gotten the bone scan and that there may be many people my age with it undetected. I feel that at 27, if the situation is worsening, I will still have plenty of time to use the bisphosphonates in a preventative manner.I think I am lucky to know that I have this problem and have time to play experiment with treatment options.

 
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Old 03-08-2013, 09:46 PM   #19
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Re: 25 years old just diagnosed with osteoporosis

Are you saying that you already saw the Endo? Did he recommend Fosamax? Did the Endo have you do a urine collection test to check for bone loss rate?

 
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Old 03-08-2013, 09:49 PM   #20
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Re: 25 years old just diagnosed with osteoporosis

Yip I have seen the endo and he reccomended fosamax, I have the prescription sitting in my bag. He was even confident we could get funding for me to have the large IV dose so that I wouldn't have to take a pill every week, though I declined that option.

He did order urine tests and some more blood tests so that is why I am going to see him again soon before I start taking the drug. Although he rang and left me a message 2 days ago with some info to complete the prescription so I could take it in and start straight away which is a little confusing..

 
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Old 03-09-2013, 08:03 AM   #21
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Re: 25 years old just diagnosed with osteoporosis

Tuska, one other option you have: there are physicians who are metabolic bone specialists, who deal with osteoporosis primarily and other bone disorders. Because they specialize in this problem, they tend to be the most informed about causes, treatment, and the little nuances of treatment that can be helpful. They could work with you on alternatives to meds to enhance your bone strength. You can do a search for metabolic bone Drs in your area.

 
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Old 03-09-2013, 09:25 PM   #22
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Re: 25 years old just diagnosed with osteoporosis

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Yip I have seen the endo and he reccomended fosamax, I have the prescription sitting in my bag. He was even confident we could get funding for me to have the large IV dose so that I wouldn't have to take a pill every week, though I declined that option.

He did order urine tests and some more blood tests so that is why I am going to see him again soon before I start taking the drug. Although he rang and left me a message 2 days ago with some info to complete the prescription so I could take it in and start straight away which is a little confusing..
One more thing to consider. When I saw my Endo bone specialist years ago before I was menopausal he had suggested that I might possibly have a mild form of Osteogenesis Imperfecta. That would be a mild form of Type I OI. I have been reading more about it now. Persons with this would appear normal outwardly but would tend to fracture more easily. Also it can account for a young person with osteoporosis. It stated that biophosphonates (like Fosamax) can help but it is unknown if this would be good long term since that can affect bone quality. Mostly exercise and nutrition are the answer but not excessive supplementation of Calcium.

I wish I could be tested for this just to know for sure. With Type I the person produces normal collagen but only half the normal amount which accounts for the bone weakness.

 
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Old 03-10-2013, 05:22 PM   #23
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Re: 25 years old just diagnosed with osteoporosis

Again thank you for all your replies.

Is there another term for the bone specialists ladybug? I have tried searching those terms but seem to just get endocrinologists who list bone disorders in their list of specialities as a standard endo.

It is very frustrating. I wonder about OI. The thing is, I never typically was one of those kids prone to breaking bones. I once broke my collar bone from a large fall ~ 3m. But was a very active kid and had many other accidents with no trouble. It is just the rib fractures in the past year which lead me to get a bone scan. I am also part Pacific Islander, who are supposed to have some of the most dense bones around!

I have decided to take my time in making a decision. I have ordered "Your Bones" and am going to talk to a specialist bone researcher at my university who specialises in creating anabolic aids for osteo and has worked on things such as lactoferrin.

 
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Old 03-10-2013, 05:39 PM   #24
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Re: 25 years old just diagnosed with osteoporosis

The only thing I can think of is a bone disease specialist, as opposed to orthopedist or endo. The Universities usually have one, so this person may be that type specialist, as they are often involved in research. You might also look for an osteoporosis specialist. OI generally presents in childhood with fractures from the numerous falls and accidents kids have.

 
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Old 03-10-2013, 05:44 PM   #25
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Re: 25 years old just diagnosed with osteoporosis

Thank you Ladybug. This person is "just" a scientist researching the area who happens to be doing collaborations with researchers at my institute so I am hoping she won't mind sharing some information with me. Hopefully she will be able to direct me towards a bone disease or osteoporosis specialist.

 
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Old 03-11-2013, 08:46 AM   #26
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Re: 25 years old just diagnosed with osteoporosis

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It is very frustrating. I wonder about OI. The thing is, I never typically was one of those kids prone to breaking bones. I once broke my collar bone from a large fall ~ 3m. But was a very active kid and had many other accidents with no trouble. It is just the rib fractures in the past year which lead me to get a bone scan. I am also part Pacific Islander, who are supposed to have some of the most dense bones around!

I have decided to take my time in making a decision. I have ordered "Your Bones" and am going to talk to a specialist bone researcher at my university who specialises in creating anabolic aids for osteo and has worked on things such as lactoferrin.
I never fractured anything as a child either, and only started to get stress fractures in my feet in my 30's. This was a time of lots of running and not wearing the right shoes. So likewise....I don't know what to think. A few in my family have had scoliosis. My adult teeth were slow to develop. Not sure if that is a sign.

I wonder what you mean by "creating anabolic aids for osteo"? That sounds interesting. I haven't heard of lactoferrin.

 
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Old 03-11-2013, 12:15 PM   #27
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Re: 25 years old just diagnosed with osteoporosis

Anabolic = building or creating new, Catabolic = breaking down. Bisphosphonates work my inhibiting osteoblasts (which break down bone). However research is emerging that in the long run this may follow on to a decrease in osteoclast (which build new bone) activity. So bisphosphonates are a catabolic aid. New research is going into anabolic therapy, to boost osteoclast activity instead.

At least this is how I understand it after a few days of reading!

 
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Old 03-11-2013, 03:38 PM   #28
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Lightbulb Re: 25 years old just diagnosed with osteoporosis

Hi, I was just dianosed last week via a DEXA and really heard through all of the talking that vitamin D, calcium, and sunshine would be a start. Sorry to hear that you are so young but keep your head in the game. Good luck and God bless.

 
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Old 03-11-2013, 04:32 PM   #29
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Re: 25 years old just diagnosed with osteoporosis

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Originally Posted by tuska View Post
Anabolic = building or creating new, Catabolic = breaking down. Bisphosphonates work my inhibiting osteoblasts (which break down bone). However research is emerging that in the long run this may follow on to a decrease in osteoclast (which build new bone) activity. So bisphosphonates are a catabolic aid. New research is going into anabolic therapy, to boost osteoclast activity instead.

At least this is how I understand it after a few days of reading!
I know what you mean by Anabolic but I wonder how a doctor would be creating this? Would that mean creating a supplement ?

Evista and Forteo are supposed to be anabolic. The Evista acts like an estrogen, and the Forteo being a parathyroid hormone. Yes, I have also wondered about the logic of the Catabolics like Fosamax and Actonel. Seems that basically they don't know how much bone loss they are inhibiting and how that effects the bone growth etc. It's a stab in the dark.

 
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Old 03-12-2013, 01:50 PM   #30
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Re: 25 years old just diagnosed with osteoporosis

Sorry, I posted a reply but was talking about research this lady is doing and got into trouble. I was not aware this is not allowed, as a biomedical engineer researcher I am so used to discussing research I did not think anything of it but I understand how this could be dangerous. Prehaps google lactoferrin can give you some more info...

 
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