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Old 09-28-2007, 12:34 AM   #1
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Dr wants to put me on Forteo-other alternatives?

Hello -
I am new to this board and feeling anxious. I eat somewhat healthy, exercise and really have no other health issues, except for my osteoporosis. My #'s have gone down with the latest scan and my Dr immediately said I should start with the Forteo shots. He did the blood work and that came back OK, but on the urinalysis it showed excess calcium in the urine which indicated to him that my bones were not absorbing the CitracalD enough to help me. Some of this may have been my own doing as for the past two years I was taking the Citracal (two pills) in the morning on an empty stomach. I just didn't realize that this is not the way to do this. Could this have been hurting me and causing this high level in the urine? The citracalD is only 500 mg and I thought I had read somewhere that the calcium pill should be at least 600mg. If anyone can help me, I would appreciate it.
Thank You!
Kathy

 
Old 09-28-2007, 03:55 AM   #2
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Re: Dr wants to put me on Forteo-other alternatives?

HI Kathy and welcome to the board. I don't think taking the citracal on an empty stomach caused any trouble. Calcium carbonate needs to be taken with food, but the citrate form doesn't. Did your dr. do any other test to see if the high calcium reading was coming from something else?

I take strontium citrate to help my bones. Its a natural supplement that is similar to calcium in how it helps the bones. It helps build new bone density and can reduce fractures. Do some research on all the choices and make a decison that you can live with. There are many smart people on this board so if you have questions just ask..someone will be able to help. take care...phyllis

 
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Old 09-28-2007, 05:17 AM   #3
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Re: Dr wants to put me on Forteo-other alternatives?

Hi Kathy-and a welcome from me too! You don't have to rush into any treatment right away. Take your time, do some research into treatment options, and consider reading "The Myth of Osteoporosis" by Gillian Sanson to put things into perspective. These boards have some wonderfully informative posts which you may find helpful.

You mentioned having high urinary calcium: were you tested for hyperparathyroid? Also, you mentioned that your BMD numbers went down significantly. Are you going through menopause? Because many women can lose up to 20% of BMD at this time. If you feel comfortable posting your scores here, someone may have other words of wisdom for you.

I'm also one of the strontium users; I just started it a couple of weeks ago. My numbers have been steadily plummeting since age 45 (I'm 51 now) and I've actually quit seeing my gynaecologist because he became angry when I refused Forteo, and I cannot tell you how many specialists have shoved scripts for Fosamax at me (which I also refused). You have to trust your gut feelings on what is the best treatment option for you, and don't buy into the mass marketing of fear.

 
Old 09-28-2007, 05:34 AM   #4
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Re: Dr wants to put me on Forteo-other alternatives?

Thank you for responding and look forward to hearing from many others.
I am 65 years old. I was considering calling my Dr to have him fax me the copies of my tests. I also had blood work done.
Even before I took the tests he was talking about taking this Forteo which sort of set me back on my heels. And yesterday when I said to him why are you telling me to take the option that is at the end of the road before considering something else? He just feels that this is the way to go. And if it is, then so be it - but I will talk to another professional(s) to see what my options are.
As far as strontium - where can I purchase this? Different doses?
Thanks again!

 
Old 09-28-2007, 12:53 PM   #5
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Re: Dr wants to put me on Forteo-other alternatives?

Hi Kathy..i second the suggestion to read th Myth of Ostoeporosis...its a great source of info and like starfish said it really puts things into perspective and aleviates the fear factor. I was dx in May 2006 and until i read that book i felt i was scared to move...hahaha. Time, education and doing what is right for you will take you a long way. Like anything else, with time it does get better.

The strontium can be purchased online...just do a search and you'll find lots of sites. I haven't been able to find it in any stores in our area. There are several brands..i take NSI strontium, some of the others take AOR or DR. Best. I take 2 340 mg. caps a day at bedtime. It has to be taken several hours away from calcium and preferably on an empty stomach. If you mention it to your dr. he probably won't be familiar with it or with the studies done on it. It has been tested in people and has shown to be safe and effective.

Good luck on search for what's right for you. There are many on this board who do take the current osteo drugs so they can tell you the pros and cons of those. have a good weeknd..take care..phyllis

 
Old 09-28-2007, 01:57 PM   #6
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Re: Dr wants to put me on Forteo-other alternatives?

Hi Kathy
I just finished up 2 years on Forteo and I have nothing but positive words about it. After just a few months my back pain was almost gone and I feel so much stronger in general with lots of energy. I am following up with Fosamax and will wait to see in about 3-6 months how it is working. I know Forteo is used for people with severe osteoporosis who are at high risk for fracture, mostly people who are older than me(56), but I fit into the severe category. Good luck with your decision. When I mentioned strontium to my doctor, his feeling was that the stuff you buy here in the states is not regulated and you can't be sure of what you are getting. I think we all have to make our own decisions about what is right for us, and there is no right or wrong when it comes to us deciding what to put in our bodies. Many on this site have chosen different paths and what has been so great for me is that we all respect each other when it comes to our individual reasons for our decisions. I have gotten tremendous support and information from this board and I am sure you will too.
Trail

 
Old 09-28-2007, 05:16 PM   #7
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Re: Dr wants to put me on Forteo-other alternatives?

Hi Kathy,
I used the Forteo for 2 years and it worked great. The only problem is that it's a time limited medication and even though I wanted to continue it, my doctor wouldn't agree. I got a second opinion and that doctor also wouldn't agree - same clinic. I've been done with the Forteo for almost a year now. Unfortunately, my T scores went down alot after getting off the Forteo so apparently I needed it. The doctors were pressuring me to use IV bisphosphonates but I feel that there are too many risks involved and I can't take them orally. So, I'm continuing with the Citracal, eating dairy products, and walking for exercise. I think I will just take my time in deciding what to do next.

 
Old 09-28-2007, 05:50 PM   #8
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Re: Dr wants to put me on Forteo-other alternatives?

Looking forward to hearing all your thoughts and actions that everyone has taken.
I think the one thing that had me scared was my Dr had said I would be on Forteo for the rest of my life and now I'm reading that several users have only been on this for two years.
I do have an appt in November to see an Endo Dr and am hoping to explore all my options.
I found out someone I know has been having the high calcium in her urine and her Dr put on a very strong strength of Vit D and this has been going on for three years now. She's had an annual Dexascan and this has helped.
Wondering if anyone else has tried this treatment???

 
Old 09-29-2007, 08:20 AM   #9
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Re: Dr wants to put me on Forteo-other alternatives?

Hi Kathy: I've been on Forteo for 16 months with great results and no side effects. The FDA limited Forteos use to 24 months. There are a couple of people here going beyond the 24 mos, but that is very unusual. Have you read the literature on it?

Below is a link that explains it. Good luck with your decision. My dr feels the same as Trails on OTC Strontium.

[url]http://www.ccjm.org/pdffiles/DEAL703.PDF#search=%22forteo%20and%20ost eosarcoma%22[/url]



 
Old 09-29-2007, 01:06 PM   #10
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Re: Dr wants to put me on Forteo-other alternatives?

I received a script today from my Dr and he has ordered the following tests:
Serum Cortisol, PTH Level, SPEP, T Transglutaminase.

What could these show? Are they all just blood tests?

Thanks!

 
Old 09-29-2007, 01:27 PM   #11
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Re: Dr wants to put me on Forteo-other alternatives?

Hi Kathy: Yes these are all blood tests. Serum Cortisol measures you stress hormones, PTH measures your Parathyroid Hormone level (forteo is man made parathyroid hormone) SPEP measures the major blood proteins, and Transglutaminase is usually checked if you have or are checking for Celiac disorder. Do you have any allergies to wheat or intestinal probs? IgG antibodies are measured to check for gluten allergies, which can be a secondary cause of osteoporosis.

I've never heard a Dr recommend Forteo longer than the 24 months, did your Dr actually say that? A couple of people on this board are taking it longer than 24 mos, but I absolutely can't find anyone to recommend that. Some of us are so pleased with the results of Forteo that we would like to take it longer, but every Dr I've asked will not go over the FDA recommendation of 24 months since it was only tested for that length of time in the clinical trials. My insurance will not pay beyond the 24 mos because it's considered experimental.

Good Luck...

Last edited by DesertBloom; 09-29-2007 at 01:50 PM.

 
Old 09-29-2007, 02:10 PM   #12
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Re: Dr wants to put me on Forteo-other alternatives?

Hi Kathy!
Regarding your ? on how much calcium........I believe your body can only absorb 500 at one time. You should space that dosage out through the day. On the days that I drink a glass of milk or other calcium rich food with my meal I split a 500 in half and take it .

 
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