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    Old 02-23-2007, 01:41 PM   #1
    PikaB
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    Thumbs up My 11-month progress report (Forteo)

    I've now been taking Forteo for 11 months. My endo has his own DEXA scanner, so (since different DEXA machines are known to give different readings) I asked my primary care doc to order another another DEXA from the lab where I had my original DEXAs done. That one machine has now given me the following readings:

    SPINE
    Jan. 2005 T = -2.2
    Jan. 2006 T = -2.65 (Osteoporosis diagnosis)
    Mar. 2006 began Forteo
    Feb. 2007 T = -1.95

    HIP
    Jan. 2005 T = -1.67
    Jan. 2006 T = -2.19
    Mar. 2006 began Forteo
    Feb. 2007 T = -1.58

    In addition to the Forteo, the following alternative therapies were begun in 2006 and are still being used by me:
    (a) vibration therapy (Soloflex WBV platform, 2 x 10 min. sessions per day)
    (b) 100 g. natto eaten every other day (for vitamin K-2)
    (c) xylitol chewing gum (Xylichew)
    (d) shoulder weights (5 lb. total, worn approx. 2 hours per day)
    (e) 1/8 tsp. baking soda dissolved in water (every 5 hours, every other day when fasting) (for alkaline and bicarbonate)

    In the medication guide which comes with each month's Forteo, there are the results of some clinical trials, including one involving men who took Forteo for 10 months. In that trial, the men had an average spinal BMD increase of 5.9% and an average hip BMD increase of 1.2%. During my 11 months on Forteo, my spinal BMD increased 12.3% and my hip BMD increased 11.7%.

    With these substantial BMD gains, I am hopeful that after my 2 years of Forteo is completed, the alternative therapies (which I plan to continue) will enable me to preserve my BMD without resorting to bisphosphonates.

     
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    Old 02-23-2007, 04:26 PM   #2
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    Re: My 11-month progress report (Forteo)

    Hi Pika B WOW!!!!!! that is really impressive, how absolutely wonderful for you. I just came home from my doctors today and he suggested forteo for me, gave me alot of information, to be honest right now I have information overload and am somewhat in a quarry for a decision. My biggest concern is side effects, the info mentioned dizziness and fast heart beats, I do have heart problems especially with my electrical system, so I am planning on making a appt with my cardiologist to see if I can even entertain the thought of taking forteo. I do not believe I could tolerate dizziness, to me dizziness would be a deal breaker. Would you please respond to any side effects that you may have encountered over the months taking the forteo, or when you first started taking the medication. I told my doctor that I wanted to take the more natural approach to my osteoporosis and he said that forteo is exactly just that, the more natural way for your body to build bone. This may be a silly question, but I have been calculating the injections one per day and for two years 730 injections into my tummy or thigh, will my skin hold up considering my age 68. Would you be so kind to share the deciding factor you considered before your choice of forteo. Thank you for your good news, I cannot tell you how happy I am for you. Blessings!!!! Wildflowers

     
    Old 02-23-2007, 06:09 PM   #3
    PikaB
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    Re: My 11-month progress report (Forteo)

    Wildflowers: I also have had heart problems with my electrical system (brief paroxysmal tachycardia), but I did not notice any increase from the Forteo. The side effects of Forteo which I did notice were:
    (a) very slight dizzyness, but not enough to worry about;
    (b) diarrhea, which seemed to be associated with injections on the left side of my abdomen, so I now only inject on the right side, and modify my diet as necessary;
    (c) for the first few weeks of Forteo, I sometimes would experience throbbing in a leg when trying to get to sleep at night.
    I consider these side effects minor compared to the potential benefit of stronger bones.

    Taking an injection every day does not bother my skin, since there is a wide target area.

    I felt I had to try a prescription medication, since I had previously tried the totally "natural route" in 2005 (calcium, Vitamin D, exercise), but my BMD had gotten worse. When my endo explained the options available to me (Forteo vs. bisphosphonates), Forteo was the obvious choice since it actually builds new bone.

     
    Old 02-23-2007, 07:03 PM   #4
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    Re: My 11-month progress report (Forteo)

    Pika,
    Congratulatons on your improvement. It looks like it is a beneficial therapy even with T Scores of a little over 2.5. The FDA is recommending Forteo for those with severe osteoporosis and a fracture only. It's strange though how the second year on the medication the increases in bone density are usually less and I don't know if there's an explanation anywhere in the literature about this. Keep up what your doing.

     
    Old 02-23-2007, 07:17 PM   #5
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    Re: My 11-month progress report (Forteo)

    PikaB-Congratulations and thank you for sharing your information. You are so fortunate. Did your doctor help you design your regimen? It is both interesting and original. You have certainly piqued my curiousity. I am on my 6th month of forteo. I am one of those in the minority here who has trouble with the shot-I get dizzy and it really puts me off food for hours. Sorry wildflowers to report this but as I said I do think most people at least here on the board have no problem. Anyway, if I could get your results PikaB it would definetely be worth it.Pika B would you clarify a few things-
    1.what are shoulder weights?
    2.eating natto, is it like cheese? or what? I read it is fermented soy-is it high in sodium?
    3.xylito chewing gum, again you've got me stumped . what is it and why are you chewing it?
    4.the baking soda regimen-would you refer me to some literature that would explain this element of your bone plan?
    5.Besides the weighted vest, did you do any weight lifting exercises?
    DId your doctor play a role in putting all these pieces together or was it on your own?
    With your results , you have me very interested.

     
    Old 02-23-2007, 07:32 PM   #6
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    Re: My 11-month progress report (Forteo)

    Hi PikaB- I forgot to add my last question. While on Forteo did you ever have a ntx telopeptide test? If so, would you let us know your result? You have really been building bone!
    Thank you for sharing.

     
    Old 02-23-2007, 08:37 PM   #7
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    Re: My 11-month progress report (Forteo)

    Great news. Congratulations. I had about a .23 % increase in bone density in my spine after about 20 months on Forteo. I'm just finishing up my last pen this month. It will be kind of weird not to take the shot each night. I had no side effects at all from the Forteo except for maybe some twinges in my hip. Can't really say if they're from the Forteo or not.

    I will see my endo next month and expect that he will put me on Actonel or Fosamax. I've never tried those drugs, so I don't know if I can tolerate them. I'm nervous about the jaw necrosis stuff, but my gynecologist said its a rare complication and to go off the drug a few months before undergoing invasive dental procedures. Ah well, nothing is easy. I'll have to think about where to go from here. Anyway, I just wanted to congratulate you on your great results.

     
    Old 02-24-2007, 03:02 AM   #8
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    Re: My 11-month progress report (Forteo)

    Quote:
    Originally Posted by osteoblast View Post
    ...While on Forteo did you ever have a ntx telopeptide test?...
    No.

    Quote:
    ...Did your doctor play a role in putting all these pieces together or was it on your own?...
    No, it was just my own. I haven't even told him about my alternative therapies, since he seems so mainstream; aside from the Forteo he only recommended calcium, D, and exercise. But when he saw DEXA improvement he told me to "Keep doing what you are doing."

    Quote:
    ...What are shoulder weights?...
    Weighted vests have been shown to increase bone density. Shoulder weights are similar except that they just sit on the shoulders, like shoulder pads. The ones I use are actually two All-Pro ankle weights, but I fasten the ends into one big loop which slips over my head and onto my shoulders. It lets me feel not so inactive when I am sitting at the computer, and also forces me to sit up straight. But don't try to bend over while wearing them!

    Quote:
    ... Eating natto, is it like cheese? or what? I read it is fermented soy-is it high in sodium?...
    It is a fermented soy product and only has a tiny amount of sodium (unless you add something like soy sauce). There are several previous message threads here about natto, including
    [url]http://www.healthboards.com/boards/showthread.php?t=400652[/url]

    Quote:
    ...Xylitol chewing gum, again you've got me stumped . what is it and why are you chewing it?...
    Xylitol is a natural sweetener which has been found to increase bone density and reduce cavities.

    Quote:
    ...The baking soda regimen-would you refer me to some literature that would explain this element of your bone plan?...
    See the thread at
    [url]http://www.healthboards.com/boards/showthread.php?t=437038[/url]
    The study involves potassium citrate, but it seems to me that probably similar "Neutralization of the Acidogenic Western Diet" could be obtained by taking a little baking soda. But I make sure it is thoroughly dissolved in water first, and I only take it on days when I am fasting, so that it doesn't interfere with stomach acid necessary for food digestion. (I fast every other day, but that is a different story.) Taking baking soda like this is very experimental (possibly not safe), but it sure is cheap!

    Quote:
    ...Besides the weighted vest, did you do any weight lifting exercises?...
    Once or twice a week I do some shoulder exercises, which involve a little bit of weight lifting. But my daily exercises are all gentle stuff.

    Thanks to everyone who posted messages of support.

     
    Old 02-24-2007, 04:41 AM   #9
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    Re: My 11-month progress report (Forteo)

    Good Morning Pika B This is wildflowers, Thank you again for your wealth of information, it really does feel so unbelievably good to see one of us have fantastic results. Pika B if I should start on forteo and have side effects and have to discontinue, would I have to be eased off the medication slowly rather than to abruptly stop it? The reason I am so caught up in the dizziness aspect of the med, I suffer from positional vertigo from time to time and it is not fun..
    Blessings!!!

     
    Old 02-24-2007, 08:37 AM   #10
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    Re: My 11-month progress report (Forteo)

    Hi PikaB-Thank you so much for your helpful response. I will follow the links and look into the various methods you used. On the natto topic, I did find k2 (90mcg) natto extract at the health food store. Jarrow was the supplement co.
    How much calcium and d did you take a day? Would you let us know type and amount? Did you also take trace minerals?
    I see you are in the sunbelt, are you sunning yourself on a regular basis? I am up here in the sunless pacific northwest. I was just found to have a vitamin d defiency- my d level(25OH) was 48 in June, 36 in August and now 26.9. The bone specialist has prescribed drisdol a d prescription supplement. I have not picked it up yet. You take 50,000IU 2x a week for 3 weeks and then check d level in the blood. I am a bit concerned about the megadose, and it is vitamin d2 which I have read is not comparable to D3. If anyone has
    taken drisdol I would be most interested.

     
    Old 02-24-2007, 11:06 AM   #11
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    Re: My 11-month progress report (Forteo)

    Hi PikaB: That's fantastic news... Congrats!!! I also use the xylitol tooth paste and nasal spray but for different reasons as well as the bone effects. I hope you continue to see improvements in your bmd over the next 13 mos and can continue with your current exercise, diet, etc. Are you still doing the tai chi on the WBV? Great News!!!!

    WildFlowers: I also have heart probs, and the forteo has never had any detrimental effect on that. In the 10 months I've been taking it I only got dizzy a couple of times, and it never lasted for more than a minute or so. I also had to stop taking the forteo for a month, and no you don't have to be eased off of it. Eli Lily gives you the first pen free, so if you wanted to try it out, you could see how the side effects go and stop it if need be. Aside from the slight dizziness a couple of times the only other side effect I saw was some weight gain, but honestly I can't say for sure it's from the forteo The needle you use is so small I don't see how your skin would break down, my shots rarely leave even a mark, and I use my thighs. I like your drs explanation of forteo being natural, since forteo is genetically engineered parathyroid hormone (PTH), which our body makes anyway.

    Osteoblast: Have you ever tried taking the forteo before bed, so it doesn't bother your meals or make you dizzy because you'll be lying down anyway?

    Last edited by DesertBloom; 02-24-2007 at 11:10 AM.

     
    Old 02-24-2007, 12:07 PM   #12
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    Re: My 11-month progress report (Forteo)

    Deserbloom-I had heard that forteo in the evening was giving people insomnia,so I didn't want to do the shot in the evening. But, as the dizziness and lack of appetite (especially the lack of appetite) is not helping the quality of my life-I may try the evening. My doctors (one at Mayo and one local)don't seem to want to talk about these details at all(as dizziness is transient and lab test ok).So, no help there. Next time I go back to Mayo later this year, I am requesting a new dr.I have been advised that changing dr. at annual appt. ok but not till I go back. And I am trying to find a local dr. that will work out for me. I tried a local bone specialist recently and it did not work out at all. He had a very "old school" I'm in control here and I'll ask the questions attitude. No interest in responding to combo therapy questions, no interest in vitamin K or anything. I haven't given up yet and I am going to persevere to find a doctor who will be a partner in helping me to deal with my hypothyroidism and osteoporosis.

     
    Old 02-24-2007, 01:09 PM   #13
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    Re: My 11-month progress report (Forteo)

    Desert Bloom, thank you for sharing your experience regarding forteo, it's a bit puzzling to me that if bone density decreases after the first year of injections, why continue to the second year. If progress is made during the first year could I not just go on a hormone pill to save what I have accumulated. When I went to my doc and told him I would like to start out with the hormone pill first and if that didn't work go to forteo, he said the opposite would be the way to go. I would take forteo first and end up with a hormone pill. I know alot of folks are frightened of the hormone pill but considering some of the other toxic stuff out there I decided to choose the lesser evil. My doc smiled when I told him I was trying to decide my liver, my heart, my digestive system, my kidneys etc etc or my bones. What a great idea desert bloom, when and if I start forteo I would definitely do it at bedtime and if I get dizzy I just would not know it, and if it keeps me awake I would imagine sooner or later I would drift off to sleep, my imagination can run wild, especially when one is watching for side effects. Why desert bloom did they give me a jug for a 24 hour urine, what does that do? Does forteo stay in the blood system long and what is it made up of that watching our calcium is very important. I had a long list of questions and I asked alot but after I arrived home I thought, jeepers creepers there were so many more things that I wanted to know. My doc is giving me downtime to make a decision and I appreciated it so very much. The positive side is that I have no problem actually giving myself injections, I am just a bit nervous about what is in the syringe. My doc said small needle, small amout. oh well! enough ruminating already. Thanks a bunch. wildflowers

     
    Old 02-24-2007, 01:25 PM   #14
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    Re: My 11-month progress report (Forteo)

    The 24 hour urine test looks at the bone breakdown in the urine. I'm sure someone else can explain it in more detail. There is an alternate test which is a second of the day urine specimen so you don't have to collect it for 24 hours. My doctor has me do that one instead. The Forteo leaves your system within an hour so that's why daily injections of medication are necessary. The medication keeps your calcium level stable at a level that helps bone growth. You have to be monitored while on it to make sure your calcium level doesn't rise above accepted levels which can cause different complications. You should be tested before starting Forteo to make sure you don't have a problem with the level that would dis qualify you for this type of treatment.

    I don't think the second year on Forteo causes a decrease in bone density but just increases at a slower rate with some people.

     
    Old 02-24-2007, 01:56 PM   #15
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    Re: My 11-month progress report (Forteo)

    Wildflowers,
    I wanted to respond to and agree with the ladies who addressed your heart issue with regards to the Forteo. I am at the end of my 20th month and was diagnosed with PSVT this year. I actually took a month holiday from Forteo to make sure it wasn't causing my fast heartbeats. I had several episodes during that month, so I am sure the Forteo has nothing to do with it at all. I also have occasional vertigo, and it hasn't been any different since I started the Forteo. I can go for years without an incident and then all of a sudden when I am laying in bed it comes back. It usually resolves in a few days and doesn't affect my daily routine. The other thing I wanted to mention is that I don't think there is firm data on what year you show the most improvement with the Forteo. Some people show it the first year, but others the second. I think because it is still up in the air, they want to make sure everyone gets the fullest benefit by having them stay on it for two years. Also, my doctor has said that the bone density continues to improve after you're finished when you do your after treatment, whatever that might be for you. It could be the bisphosphonates, naturapathic herbs, exercise, vitamins, strontium, and hopefully the choices will continue to broaden as the issue of osteo and its importance gets more attention. Good luck with your decision.
    Trail

     
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