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    Old 05-31-2007, 02:08 PM   #1
    Kathy1813
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    New here - need help on Forteo.....

    I have been on Fosamax for at least 11 years - stopped about 1 1/2 years ago since I was having trouble swallowing. Pills just did not go down right and sometimes would melt some before going down so I was afraid to take the Fosamax any longer. I have not been on anything for the last 1 1/2 years. When I was taking the Fosamax, I did not get much better on the dexa scan - I did for the first year or so but then gradually went down. I was taking calcium also and walking. During this last 1 1/2 years, I have had 3 compression fractures in my back and now I have back pain everyday. Since my scores are now so low and the doctors don't want me on the Fosamax or those kind of drugs any longer, I am supposed to go on Forteo. I go tomorrow for a class on how to give myself the shot.

    I am scared to death that I won't be able to do this. I read somewhere on this board that there is a lot of preliminary work you have to do before you actually give yourself the shot. I know I am a big baby about this, but I am afraid - afraid of the black box warning too. But there are no other options for me. I just can't let my bones crumble away.

    I have always done everything right. I have eaten right, taken my calcium, exercised everyday and still my osteoporosis gradually gets worse.

    I need someone help me think this through. Tomorrow is Friday and there will be no one to call on Sat. or Sun. if I can't do this by myself. The offices will be closed.

    Any advice for me?

     
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    Old 05-31-2007, 02:42 PM   #2
    DesertBloom
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    Re: New here - need help on Forteo.....

    Hi Kathy: I've been on Forteo for 13 months, and have had no problems. I understand your reluctance to give yourself a shot, but I promise, it's not that bad. It's not like most intramuscular shots that really sting, because the needle doesn't go deep; it is a sub q injection so the needle is extremely small 3/16 of an inch in length and you can't feel much other than a jab.

    You shouldn't have any trouble giving yourself the shot, and I think that your anxiety is normal, but will go away tomorow when you try it for the first time.

    The only thing I did before starting the shot was to have a basic metabolic panel where they check your calcium levels. If you are going to the class, your dr must have already done this test. You need to have normal calcium levels to go on forteo, so that's probably been done already. You can have a test 3-4 mos after starting it to see if it's working, but that is also a simple urine test.

    At the class they will teach you how to use the forteo pen, and after a couple of times you'll find it really easy to do. The dose is pre measured, so all you do is prep the pen to release the med. All this entails is dialing a couple of numbers, releasing a disgarded dose, and then injecting yourself. The dose is really small and the whole process doesn't take more than 5 minutes.

    It's normal to be alarmed about the black box warning, but I haven't had any side effects, like you did with fosamax, and so far no one has contracted cancer from the forteo. I lot of people are on it so since there haven't been any reported incidences of cancer that's really pretty good, considering the number of people taking it.

    I think you'll find that it's much easier to take than fosamax and it will help you build "new" bone at a much faster rate. I can't think of anyone who had stomach/esophagus probs on this, because it isn't metabolised in your stomach, in fact it bypasses it altogether. I have seen great increases on this med so far in bone density, and I'm sure you'll find the same.

    If you have any questions on the shot tomorrow, once you get home, just post them here, or you can "always" call the number you will get with the kit for forteo-the rep/nurses are always available 7 days a week. You should get a dvd, travel kit with ice packs, a pamphlet, needles/alcohol wipes (I did at least) and the instruction manual which is very straight forward. Don't hesitate to post back here with any questions or concerns.


    I'll let the others on it chime in here; so good luck, and try not to worry about it, it is really simple, and should work "much" better than fosamax.

    Here's a link on it if you would like to read about it.

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

    Last edited by DesertBloom; 05-31-2007 at 02:50 PM.

     
    Old 05-31-2007, 02:58 PM   #3
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    Re: New here - need help on Forteo.....

    Hi Kathy- I am a big baby too when it comes to shots. I am well into my first year on forteo and the injections are ok. I will be glad when giving myself a shot every night is over with. As far as learning to do it , after the first time it's ok. The needle doesn't really bother me at all. The needle is pretty small. It is just sometimes the forteo really burns when injected. That hurts but not for long and it's not everyday by any means. I also had alot of unpleasantness when I did the shot in the afternoon. My first doc did not suggest any particular time.The afternoon was bad because I felt dizzy and queasy after the shot. It totally took away my appetite, I had no interest in food until the next day before the shot. Many others on this board are doing the shot before bed , and suggested I try it. Now I do the shot right before bed and it's alot better.

    If you are afraid of doing the injection and live with someone, ask them to give you moral support when you are doing the shot. It has helped me , also give yourself a positive message then. Try in some way to balance the fear out with something good.

    Did your dr. do a comprehensive diagnostic work up to rule out other causes of osteo? Be sure that celiac is ruled out- it can cause malabsorption of calcium , vitamin d etc. thus not getting the supplements through your intestinal wall. Even though I had no symptoms of celiac , I learned you can have celiac and be free of symptoms. They can do a celiac blood panel and endoscopy if needed. Also it was learned that my vitamin d was low. Be sure this is monitored and that you don't go deficient as it can impair bone health.

    If you want to ,feel free to share your age and dexa results. There are alot of very kind and helpful people on this board who have gone this path before you and who are more than willing to share.

    About your class on friday. There is a little bit of prep before the shot. It's really not much and you will get a fold up poster kind of a sheet that has a photo of each step , and each step is numbered. I was told at my class, that blind people can easily handle the shots. And, think of the diabetics who have to do shots for life and sometimes many times a day. My pharmacist told me that she is diabetic and when she was pregnant she had to give herself several insulin shots a day. It could be more difficult.

    About the weekend, if you need some support don't hesitate to communicate on the board! As I said , many here have gone through the injection jitters before you. In time, you will probably help out someone yourself. That's how it seems to go.

    Welcome to the board!

     
    Old 05-31-2007, 04:11 PM   #4
    DesertBloom
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    Re: New here - need help on Forteo.....

    Hi Osteo: I noticed something you said about the shot stinging... Usually that means you hit a small nerve. When ever that happened to me I made a mental note of the location and stayed away from it. If you continue to hit a nerve, at some point that place will usually become numb, which you don't want to happen. If you feel a sting that travels up or down from the point of injection you hit a larger nerve. There's nothing really dangerous about this, but it will hurt more than usual. Sometimes I'll mark the spot with a pen and hope it doesn't rub off before the next injection. If you skin marks easily, like you can see the injection site the next day, you wouldn't have to mark it. Just be sure to get the ink off completely and don't inject that spot. I used to give myself b12 injections years ago and those really hurt because they were im (intramuscular) injections which hurt much more-no comparison to suq q (sub cutaneous) like forteo. B12 stings real bad anyway and you had to use a long fat needle; I can't remember the gauge right now but they were at least 3/4-1 inch long and fat and you needed to get it into the muscle absolutely nothing like forteo, where you can barely see the needle and it only goes into you by "3/16" of an inch!!!!

    Last edited by DesertBloom; 05-31-2007 at 04:15 PM.

     
    Old 05-31-2007, 04:28 PM   #5
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    Re: New here - need help on Forteo.....

    Hi Kathy: I forgot to mention something... I've had many vertebral and fusion fractures as well (7 back surgeries with fractures and rods/screws). I know how you feel with the daily pain. I have constant thoracic and lumbar pain, plus many other areas as well from severe osteo arthritis. Just lately I've been having a lot of trouble with my pelvis, hips and knees, so I had x-rays but don't know the results yet. They're testing me for rheumatoid arthritis, and I hope I don't have that on top of everything else. I've been having a lot of bone pain, unrelated to forteo, and walking, standing and sitting is excruciating. Hey did any of you know that rhuematoid arthritis is a secondary cause of osteoporosis? I swear I don't remember reading this, but maybe I did. I've read so much on this it's getting hard to keep track of all of it.

    I hope to be able to post my good dexa results soon. I know that sounds wierd, but the scores I got were fantastic, but need to be recalculated by my dr since these scores need to be compared to my last scans which were CT's not dexas and there's a big difference in comparison on those scores based on age. As soon as I can I'll let you know how exciting the news is!!! Just wish the increased bmd would get rid of pain, but no such luck on that one.

    Remember try not to worry, think of something that makes you happy and serene, and you'll forget about the class tomorrow, make sure they give you a free forteo pen!!

     
    Old 05-31-2007, 06:34 PM   #6
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    Re: New here - need help on Forteo.....

    DesertBloom- Thanks for the shot info. The stinging is like a burning feeling. I have felt it before sometimes when I have been given a shot. I had assumed it was the medication flowing through me and causing a burning sensation. But, if it is hitting a nerve that would explain why it's not all the time.

    Since we are on the subject of the shot, I have a not so important question- but it's something I have wondered about. Most of the forteo pens just dribble when I prime them. Some pens have strated out dribbling and when I have been about a third through the pen , they shoot out when I prime. One pen shot out when primed from the start and all through its usage. This seems odd to me. I suppose there is some reason for this- contents under pressure or under less pressure? I just hope that it all gets into me like it is supposed to .. The other night I did an experiment on a pen that is a dribbler and went to 2 and instead of injecting , tested to see if the forteo came out. It did. I had wondered because on each injection with that pen , blood had been drawn at site, and I saw no forteo sitting on the skin. Probably this stuff is totally inconsequential , I just wondered if others had most pens just dribble on the prime?? and some shoot out?

    Kathy, ignore this stuff about the pen. It would just get you focused on stuff that is not too important.

     
    Old 05-31-2007, 06:41 PM   #7
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    Re: New here - need help on Forteo.....

    DesertBloom !!!!!!!!!!! OK now you've really got me excited for your dexa results. It couldn't happen to a nicer person! So, you're just going to dangle this in front of us for awhile. Well have it your way.

    Maybe you could give us some hints of some sort until you spring the news full out.

    You must be totally ecstatic. I am sorry though it hasn't taken the pain away. This RA angle is something new ? I believe that I have read that RA is an autoimmune disorder like my dear hashimoto's hypo. Is that so? How will you be tested for RA? Would this explain anything for you?

    Last edited by osteoblast; 05-31-2007 at 06:41 PM.

     
    Old 05-31-2007, 07:17 PM   #8
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    Re: New here - need help on Forteo.....

    The shot is nothing to worry about. The instructions are step by step which you will probably memorize after about a week of daily injections. I got paper instructions and also a Video. I learned on a Friday from my doctor's nurse, and then was on my own over the weekend. One thing that really helped me was after I practiced I actually gave myself the injection with the nurse watching so she could tell me about anything I needed to correct as I was doing it. I also was afraid that the injection might make me dizzy so I didn't want to be alone. In fact I did the injections laying down for the first week just to make sure. If for some reason you can't figure it out over the weekend go to your local hospital and I'm sure a nurse could help you but you won't need it.

    Osteoblast,
    About the priming. I'm not sure why sometimes it dribbles out and other times shoots up in the air. Maybe it has to do with the pressure or how much liquid is in the pen, or even the room temperature.

    DesertBloom,
    I hope you don't have RA. I was tested and am negative although have some OA. Have your fractures healed while your on the Forteo and has the pain decreased. I hope so.

     
    Old 05-31-2007, 07:37 PM   #9
    DesertBloom
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    Re: New here - need help on Forteo.....

    Hi Osteo: Yea I know I'm being coy here, but I have to. If I post my dexa score it could possibly give some people who are on Forteo false hope, which I will not do; I want to give the TRUE reading which I hope will still be great for me an incouraging for others.

    If you go to the link below you'll see what I'm talking about in regards to comparing QCT's and Dexa's. Since I've only had QCT's up to this point, what that actually means, and this is the maddening-irritating part is that I really never knew what my actual score was, and all of my treatment was based on something that could be inaccurate or was over estimated.

    Since I knew this going in when the dr ordered the dexa, she promised she would do the calculations on the results to show how much of an increase (being optimistic here) can be applied to treatment, and how much to overestimation. I could have had another QCT, but I didn't know what to do. That test would still give me an imprecise score, but we would have been able to tell what the actual increase was "if any" but still not accurate. If this isn't like being between a rock and a hard place I don't know what is

    Because my score was so low anyway, and because I'm not 60 yet, we decided to go with the dexa and get a full bmd. What I mean by that is when my original pc dr ordered the 2 CT's she only had my lumbar spine scanned so I've "never" known what my hips etc were.

    There is also an additional monkey wrench to through into this, and that is I have severe osteo arthritis which causes a dexa to "underestimate" your score making it look like I have better bmd than I do. I also have titanium in the L3-4 area of the spine which affects the score as well, in a positive way, like I have more dense bone there. If I haven't lost you by now your good!!!!

    So now she has to factor in "all" of these things the CT that makes the bmd look worse than it is, and the osteo arthritis/titanium which makes your bmd look better. If she can ever figure this out I'll be truly amazed.

    So hopefully you can understand my reluctance to say what they are, since they "will" be changed, maybe significantly maybe not-when I see her.

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

    !!! Scroll up to the QCT paragraph and then click the QCT link to the next page, so you'll understand my predicament.

     
    Old 05-31-2007, 07:50 PM   #10
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    Re: New here - need help on Forteo.....

    Hi again Osteo: If you were to feel nerve pain, it would be a burning shooting type of pain. You're also right that if it was the med you would feel it every time. I had this problem with the B12 and was told all this.

    In regards to the pen drippling/shooting, I have the exact same prob. Some dripple and some skyrocket out. It made me wonder how the dose was going as far as accuracy, but it must be okay, because have you ever noticed that when you get to the end of the 28 days, there is always the same amount remaining in "each" of the pens, as long as you didn't have any mishaps during the month where you lost a dose?

    They tested me for RA with several rheumatoid factor blood tests, and a bunch of x-rays, since the pain is worsening and really traveling. It's not just my back and neck anymore, its every joint from my chin to my toes. RA is an auto immune disorder that attacks the joints and bones, but it also does the same to your organs. I don't know if I have it or if what I'm experiencing with this horrible pain, is just the OA (osteo arthritis) spreading. Truthfully I haven't read a lot about it yet, because I can't handle anymore negativity. I was also told I have scoliosis by this new Rheumy. As taape knows I've been looking for some arthritis meds with no luck so far.

     
    Old 05-31-2007, 07:55 PM   #11
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    Re: New here - need help on Forteo.....

    Hi Taape: I don't have the results yet on the RA, and the forteo was started years after my fractures. I fractured many years ago, and it was only recently that they decided it was from osteop. I had surgeries to deal with the fractures, but I have so much damage to my spine, joints, nerves etc. that they can't do anything more for the pain, unless I agree to a intrathecal pump which I don't want to do.

    Hope the Limbrel works out!!!

     
    Old 05-31-2007, 08:22 PM   #12
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    Re: New here - need help on Forteo.....

    hi desert, whatever your scores are, what matters most to me and alot of us here is YOU - you are such a source of inspiration and comfort. Osteoporosis is a scary thing and the information you share makes the journey a little easier for the rest of us. i am grateful for YOU. thanks so much! ( i do hope the best for your bones too btw)

     
    Old 05-31-2007, 11:17 PM   #13
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    Re: New here - need help on Forteo.....

    Desert bloom-I too am happy for you-can't wait to hear the results. I agree with the others about what a great contributor you are to these boards.

    About the shot and stinging-that was great information. Also, Osteoblast I have experienced the same thing about the drips from the needle sometimes and other times a full stream. But I don't think there is any significance at all to which it does.

     
    Old 06-01-2007, 12:03 AM   #14
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    Re: New here - need help on Forteo.....

    DesertBloom-Yes, all the factors to be considered and figured into your dexa scores are very complex! It's a good thing that you have a brainiac bone met. specialist to help you. It does sound as though your dr.(drs.) must be encouraged by the preliminary results though. When the time comes , do share . We'll be waiting to hear.

    Again, I am sorry to hear about the pain you are living with. I wish you could find a medication that would give you some relief . Have you gone to a Pain Specialist? I thought the researchers and doctors were making great strides in the field of Pain Management. It just doesn't seem right , what you are going through.

    You will be in my prayers tonight.

     
    Old 06-01-2007, 11:36 AM   #15
    Kathy1813
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    Re: New here - need help on Forteo.....

    Thanks everyone for your replies and encouragement. I am just about ready to go to the class. I am still anxious and didn't sleep really good last night thinking all about this. My doctor has not given me any beforehand tests so I wonder about that. Should I call him Monday and ask about this? I'll check back in this evening and let you know how everything went. I'm hoping for the best you know.

     
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