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    Old 03-24-2008, 11:53 AM   #1
    kackie1
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    New To Board - Questions About Forteo / Scores

    Good Afternoon:

    I was recently diagnosed with osteoporosis - although, frankly I'm a little leery of the diagnosis.

    I tripped and dislocated and broke my right shoulder in 2005 (and tore my rotator cuff). On New Years Eve 2007, I bent down to wipe up a spill in front of my sink, slipped and broke my left shoulder (compression facture). The fall irritated my back - 3 lower disks are bulged, scarred, and dessicated. (In addition I have degenerative disks in my neck). I saw a doc for my back and asked if I was a candidate for a DEXA scan. He recommended I do so.

    Quick family history - my tiny mom had osteoporosis, but was a heavy smoker. My itty-bitty sister has osteoporosis but also has Graves disease and (despite knowing better) is a smoker. History of very fragile bones as well. I'm 49, premenopausal, diagnosed a number of years ago with fibromyalgia, former smoker, and a "bit" heavier.

    My T- and Z-scores are normal. My Vitamin D (range of 35 - 100) was 10.2. The NTx (5 - 65) was 173 - but expected due to the 2-1/2 month old fracture. The doctor diagnosed clinical osteoporosis and started me on the 2 year regimen of Forteo; once a week, 3 months of 50,000 IUs Vitamin D (with blood test in 3 months); and 1200 mg of calcium daily.

    With only a month of Forteo under my belt, I've had really no problems with the injections - other than a few bruises - although I almost immediately developed a belly; have since switched to thigh. I have however developed SERIOUS fatigue and aches. It's as though my fibro is flaring. I'm napping for hours every day and slept until 11:30 am on Saturday - and then took a 4 hour "nap" at 4:00. I'm also extremely weak. Today I woke up with a ferocious sore throat. No fever, no post-nasal drip, have gargled, taken a Claritin in case it's springtime related - no let up in pain. So bad, I opted not to go to work.

    Not only am I concerned that the Forteo may be causing these symptoms I'm not entirely certain I'm a candidate.

    Have many of you using Forteo had similar problems? Do they lessen or abate? I can't imagine (nor do I think I could make it) feeling this bad for the length of the treatment.

    I apologize for the lengthy post. I hope to hear some good advice.

    Best.

    kackie

     
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    Old 03-24-2008, 03:03 PM   #2
    DesertBloom
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    Re: New To Board - Questions About Forteo / Scores

    Hi Kackie and Welcome~~~Sorry to hear about your fx's and den disc. I've been on Forteo for almost 21 mos and haven't had any side effects or anything similar to what you've mentioned. Have you read the print out that comes with the Forteo that lists the side effects? Hopefully some of the others on it will post if they have had similar reactions. You could also call the 800 number that comes on the print outs in the Forteo box and ask them if what you are experiencing is normal or abnormal.

    What does the dr say? I'm a bit confused that you were put on Forteo with a normal t and z score, but I have heard of patients taking it if they have a "history" of compression fx's. The rotator cuff isn't related since it's a tendon, and the disc problems "can" be caused by a vertebral fx, but fx's should show up on an x-ray. I have degenerative disc and bulging discs, but no one has ever said that they were a result of a fx or low bone density. I've had many fx's but they weren't from DDD. Disc problem happen for many reasons, and not necessarily bone related. Have you been checked for fx's around the areas that the discs are bulging and the area of degeneration? DDD, usually happens from the aging process and wear and tear on the discs, especially if you have a physical job or any type of spinal injury. The discs wear out and loose their height and elasticity and become small or shrink in size causing the vertebra to rub together also causing nerve probs *if* the nerves are involved. In any case the Forteo won't do anything for you disc problems, unfortunately.

    Is it possible that the dr put you on Forteo solely for the shoulder fx? I personally don't see any reason why someone couldn't take it if it's necessary, but you usually have to have a very low bmd like something below -2.5. I started out at -3.6 and was put on Actonel and when that didn't help, was switched to Forteo (daily) and I'm almost finished with the 2 years.

    If these symptoms are from the Forteo I would rethink the purpose of taking it. I've also never heard of taking it once a week, but maybe that's something new the drs are doing, that I'm not aware of. If you read the literature on Forteo is mentions that it's reserved for those with bmd lower than -3, or who have history of fragility fx's. That statement goes on to say that the final decision to use Forteo is up to the drs discretion.

    I hope your sypmtoms go away, and I'm not sure what to say about whether you should take it or not. Does your insurance pay for it? You might want to read the paragraph in the link below that explains "who" should take Forteo.

    Let us know what you think and I hope this helped in some way.

    Here's a link that explain the use of Forteo if you haven't read it:

    [url]http://www.ccjm.org/pdffiles/DEAL703.PDF[/url]

     
    Old 03-24-2008, 04:39 PM   #3
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    Re: New To Board - Questions About Forteo / Scores

    DesertBloom:

    Thank you so much for your thoughtful and quick response. Sometimes it seems that we "laypeople" can often help each other more than some of those in the medical profession.

    My first post was, I realize now, confusing in its syntax (and punctuation). I'm injecting the Forteo daily - I'm taking the Vitamin D once a week.

    My lumbar disks apparently have no compression fractures (but OHHH when they are "acting up" and pressing on the nerves....). I sincerely believe the doc is reacting most to the 2 low-impact fractures and my familial history. The findings from the contrast MRI I had to diagnose the latest fracture actually suprised my orthopaedic surgeon as he thought it was a torn cuff. When we looked at the films, he pointed out the break and then the showed me where (as he put it) my bone was "lit up like a Christmas tree."

    I have read that side effects are fatigue, muscle weakness, and headaches. However, when one is wiped out by "fatigue" it doesn't seem so trivial. Indeed, one of the side effects is "sore throat." I'm curious if this means on occasion, constantly, or will pass. If my throat is still as bad tomorrow, I'm going to the GP for him check for strep - to which at the ripe ol' age of 49 I'm STILL very prone. (Hmmm - I've also had mono 3 separate times in 3 decades.)

    My insurance co-pay for the Forteo is $40 (I know I'm fortunate). However, if the current trouble outweighs possible future benefits, then I'll have to stop. I don't like taking meds and as I don't seem to be clearly osteoporotic, I'll have to make a decision.

    Thank you again for your insight. I hope I make the right decision.

    kackie

     
    Old 03-25-2008, 03:10 PM   #4
    DesertBloom
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    Re: New To Board - Questions About Forteo / Scores

    Hi Kackie: Glad you explained the Forteo dosage and D, I was beginning to think something new was going on with it.

    I know how horrible the pain is with those discs and you certainly have my sympathy. Are you going to have surgery on your shoulder? If so, I believe the Forteo will really help you to heal faster, if you are still taking it. They use Forteo to help speed the bone growth and healing on joint replacements, and spinal surgery so they know that it helps a lot. I don't think the patients that are doing this take it much longer than a couple of months post op, but I'm not sure. I wish they had Forteo around when I had my 7 spinal fusions, if they had maybe I would have only had 1 done.

    If I had the side effects that you do with the Forteo, I don't think I could take it, so I hope you figure out what is going on. I'm glad you read about the side effects on Forteo, because I wasn't sure about the ones you're having. Having pain and then the side effects on top of that has got to be tough-so I hope you can resolve that!!

    Good Luck, and let us know how you're doing

    Last edited by DesertBloom; 03-25-2008 at 03:30 PM.

     
    Old 04-10-2008, 04:04 PM   #5
    PunyDeb
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    Re: New To Board - Questions About Forteo / Scores

    I have not experienced the belly or weight gain others have mentioned from Forteo, but the bone pain is horrific. That's also listed as a side effect if you read the literature. Go to forteo.com and enter newbone as the password.

    Muscle cramps is another side effect I've had. I'm entering my third month. I'm hopeful this will be my magic bullet.... I'm pretty desperate.

     
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    Old 04-22-2008, 07:36 AM   #6
    debt4
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    Re: New To Board - Questions About Forteo / Scores

    Hi, I am new to the site and have been reading everyone's opinions on the Forteo. I just finished my first year and my T scores improved by 3-4% in some areas, but others that were normal now reflect Osteopena. So I am a bit confused. I have noticed in the last month to 2 months constant aching pain in my hip. I asked the doctor and he said he wanted to see my results before we look at that farther. I also have noticed (even a few months before being diagnosed) that when I wake up I litterally have to peal myself out of bed, the pain in my lower back is excurtiating. Has anyone had the same? I too did see the weight gain and it's killing me, the last thing I needed. I fractured my foot and I use to walk 3 miles a day, now to do the 3 miles kills my foot, but I keep trying.

    Last edited by debt4; 04-22-2008 at 10:29 AM.

     
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