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    Old 12-16-2007, 06:10 AM   #1
    BoomerBones
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    Taking Forteo Advice

    Just started Forteo last night after 3 years of Fosamax with no results, T11 compressiom fracture from a fall and a Kyphoplasty.

    So, some quick questions from those of you with Forteo experience:
    1. any side effects I need to look out for?
    2. any drug interactions? I've gotten zero guidance on this - either Rx or otc.
    3. any vitamin interactions? I take lots - including cal, mag, D, omega 3's, etc.
    4. any herbal interactions? I drink 20 oz of chamomile and peppermint tea every night at bedtime to help me sleep. Drank it last night right after injecting the Fosamax (for the first time) and didn't seem any the worse for it but not sure that's OK?

    Thanks as always to everyone on this board. Your continuing help and support means so much!
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    Old 12-16-2007, 10:47 AM   #2
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    Re: Taking Forteo Advice

    Hi Boomer Bones-It would be really good to read the insert that comes with the forteo pen about interactions etc.. When I first started forteo, I took it in the afternoon and for me , the afternoon shot ruined the rest of my day. I felt dizzy and completely disinterested in dinner.Now I take the shot right before bed and that made things alot better.
    Also, you will note on the insert that vit d 25 decreases by 19% and vit d 1,25 increases by 19%, some of us are still trying to figure this out. But, the standard vit d measurement checks the vit d 25. My vit d level fell dramatically and took a long time and mega doses of vit d to get up. To me it seems forteo causes us to use up vitamin d Or we can't metabolize as usual. In any event vit d level is so critical .
    What I would say at this point whn you are starting is
    get a vitamin d level test and repeat in another 3 months - push your doctor if need be
    get a urine ntx test- it is a bone turnover test- it will provide a base line for later testing to see how the forteo is working
    I am sure others will add what seemed relevant and most important to them. These were the big ones for me. And, I should add ,I didn't get the ntx till some 3 months after starting and while my d level was so -so 2 months before forteo, the doc didn't re-test and wasn't going to until I pushed at 5 months in and it was quite low- bummer! So, hopefully you can benefit from this advice that I wish I had when I started. Good luck!

     
    Old 12-16-2007, 11:06 AM   #3
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    Re: Taking Forteo Advice

    BoomerBones;

    Side effects: the only one I had was some dizziness after some exercise. The effect was transient and after a week there was nothing. I take my Forteo in the morning. Also I had my Vitamin D levels checked every 6 months at my regular checkup.

    I am just finishing up my two years and my bone density increased 16.7%. T-score increased from a -4.8 to -4.0. Still low but I feel a whole lot better. Trying to decide where to go from here. My hips are a -1.1 and that didn't change.

    I wish you well.
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    Old 12-16-2007, 05:46 PM   #4
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    Re: Taking Forteo Advice

    StarSong your scores are fantastic. Congratulations! I hope I can get the same kind of results. Are you going on a bisphosphonate now that you're off the forteo?
    Osteoblast - thanks for your comments about the vit D. I'm particularly interested in getting my vit D checked as it tended toward the low side 2 years ago but now seems normal. Of course my drs have never mentioned checking it in relationship to taking the forteo nor have they mentioned the urine nx test so your insights here are most welcome.
    I'm trying the shots at night. Tonight's the 2nd night so we'll see how it goes. I always hold my breath with new meds as I seem to get reactions from almost everything. but I really want to try to hang in here with this stuff since I don't seem to have a whole lot of other options and I REALLY don't want another fx!

    Thanks again for your input!
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    Old 12-17-2007, 01:57 PM   #5
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    Re: Taking Forteo Advice

    Hi Boomerbones: Good luck with the Forteo. I've been on it for apprx 19 months, and the only side effects I've had is that it raised my D 125, and calcium, and lowered my D 25. According to Eli Lily Forteo had the same effect on some of the participants in the clinical trials. As far as other side effects go I don't have any.

    My scores went from -3.6 to -2.3, but there is some issue with Dexa's and osteo arthritis causing underestimated scores, which I have among other things. In either case the dr is thrilled with the results. I have no idea what I'll take when I'm done, so I have to figure that out soon.

    Did they check your calcium level prior to starting the Forteo, because that needs to be watched with "some" patients. My calcium has only gone up a little but it has stayed just above the ref range, and a couple of times went back down to the highest number in the range (5.5) My dr tests Ionized calcium and total calcium, so you might want to include those with the D like Osteo said.

    I also have a NTx done 4 times a year and am completing one tomorrow. With forteo you want to see an increase in score from the last test done, and if you haven't had it done the dr can tell you what to expect for your age, etc, then on the next test hopefully you will see the increase meaning you are building "new" bones.

    I hope you don't have any problems, my course has been relatively easy on it, except for the vitamin/mineral readings which just means you have to adjust the amount you're taking. There aren't any drug/vitamin/herbal reactions I can think of, but be sure to read the package insert just in case.

    Good Luck and keep us posted, and if you have any more questions ask away.

    Last edited by DesertBloom; 12-17-2007 at 01:59 PM.

     
    Old 12-18-2007, 08:59 PM   #6
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    Re: Taking Forteo Advice

    BoomerBones:

    My doc is a specialist in osteoporosis and he is retiring from practicing to go into research on osteoporosis and I expect good things from him in the next 2-4 years.

    At his suggestion I am looking into a yearly infusion of Reclast; it was approved in April 2007. (You can also get infusions of Boniva, I think every 3-4 months.) Before I get lots of emails about it I am very aware of the issues of IV infusions with bisphosphates. I read the New England Journal of Medicine article that came out this year on Reclast. I have discussed the possibility of jaw necrosis with my dentist and my doc. For me the risk here is very minimal. There is an increase risk of atrial fibrillation but again I talked with the doc and he doesn't believe it should be a problem for me at my age, 58. But since I have a SVT we agreed that speaking with a cardiologist would be a prudent step just to be sure.

    My doc was clear that once I was off Forteo I would lose the bone if I did nothing and from what I've seen in the literature this is the case. I know some who have posted here have decided to go with supplements, exercise etc. I figure you have looked at your situation and options and have decided on that course of action. But I have determined for my situation and with my low density (-4.0) that the treatment with Reclast (or a bisphosphate), at least so far, appears to be my best option. If and when strontium ranelate becomes available in the US or Canada I would consider it also.

    I am going to be taking Forteo for an additional 2 months or so while I transition to another doc who is also a osteoporosis expert.

    I'll let you know how this saga finally turns out.

    Good luck to all of us

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    Old 12-22-2007, 08:05 AM   #7
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    Re: Taking Forteo Advice

    Hi, I wish you the best of luck. I know these decisions are so hard and doing research you find out so many negatives with the medications. I just had kyphoplasty last Friday and I still have pain. I don't know if this is normal. Anyone else out there with any stories?

    How did the Forteo work for you. Right before surgery this is what was suggested to me (right before I went into the OR). I am 34 and they're trying to get the insurance to pay for it. But during surgery, they found my bones to be really soft. Is this common with osteoporosis?

     
    Old 12-22-2007, 11:58 AM   #8
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    Re: Taking Forteo Advice

    Stephie - So sorry to hear you're having discomfort but I don't think it's unusual - at least based on my own experience with a Kyphoplasty at end of October. I had pain for almost 4 weeks and I've still got some pain, depending on how active I am.

    What I've learned is this: the doctors give you the best-case scenario and everybody's body is different. Do tell your doctor if the pain continues and maybe they will do an MRI just to make sure there's nothing else going on.

    all in all, are you glad you did the procedure?
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    Old 12-22-2007, 12:46 PM   #9
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    Re: Taking Forteo Advice

    Hi Stephi: I've never had Kypho, but I've had many spinal fusion due to fx's. From the people I've talked to that have had Kypho, they all varied in the amount and length of pain they had. I've been on Forteo for 19 months and my scores are incredible, I increased my bmd by one whole point. My insurance isn't paying for the Forteo, so my drs are giving it to me every month.

    I have osteoporosis and when I had my shoulder surgery the surgeon said my bones were like sponge. He had to put pins in my shoulder and was worried that the bone wouldn't hold the pins very long. That surgery was done a year and a half ago and the pins are still in place.

    So having soft bones is not unusual, and I hope your pain, from the kypho goes away soon. So they never did give you the Forteo before the surgery? I've talked to several people that were given that prior to hip replacement and one of the ladies is doing so well they are writting a paper on her progress. This lady is the mother of my Rheumy and she is in her 80's and very frail. Evidentially she did so well with the addition of the Forteo that they are going to document it somehow. Good luck to you...

    Last edited by DesertBloom; 12-22-2007 at 12:48 PM.

     
    Old 12-28-2007, 03:14 PM   #10
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    Re: Taking Forteo Advice

    Thanks for your kind words, DesertBloom. Actually right before I went into surgery (literally, minutes) my neurologist's nurse asked me if this was an option for me if they could get it for me. I said I had thought about it, but it would have to be free since the insurance won't cover it, so I believe I have a few boxes waiting on me. Seeing as how I just turned 34 and my BMD is -2.4, I need to do something. I wonder if I should see an endocrinologist. There has to be an underlying cause for this. If I was premenstrual or already went through menopause, I could see this. But this started 10 years ago with a compression fracture in my spine (this was never actually diagnosed then, but I know this is when I first started having the major back pain) but nothing was diagnosed until this summer.

    Anyway, hopefully Forteo works. What are the side effects?

     
    Old 12-28-2007, 03:21 PM   #11
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    Re: Taking Forteo Advice

    Hi Boomer:

    Well, Today I'm 2 weeks out. I guess I'm glad I did it, it's just hard to tell if I'll have relief. They did the T7 level and my T6 is just as bad so I could be having pain from that level on top of the still postop pain. So, I figure I'll be back on the chopping block before long. I'm just trying to figure out what's going on and who the best specialist for me is. I'm 34 with no other health problems at all and I've always considered myself really healthy. So much for that!

     
    Old 12-28-2007, 07:48 PM   #12
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    Re: Taking Forteo Advice

    Hi Stephie: I just wrote a long post to you and lost it so I hope I include everything I mentioned.

    I don't have any side effects from the Forteo and it's working unbelievably!!!! The Dr is even shock at my improvement.

    The best specialist for osteo are Mineral Metabolism docs, Endo's and Rheumy's. I had to go to a Univ Hosp to find a Mineral Met. doc, but it was well worth it. I also have an Endo and Rheumy, but I don't care for either of them, and don't see them very often, but that doesn't mean they are all like that, it's just that I live in a small town and there is only one of each type of Dr. My Min Met doc is a dream (women) she allows 45 mins for each patient (unheard of) and the only down side is they are only in one day a week and spend the rest of the week in the research lab. They are working on a gene that may explain why certain people get osteo, and if you want to read about it it's called the DARC gene.

    If you get a new Dr ask about freebies of Forteo, since that's how I'm getting it. If they don't rotate their office stock of it they have to throw it awayif they don't have a lot of patients on it. Even if they do, they usually have enough to give away some. I get mine from 3 different drs so I don't hurt their supply to bad. My insurance covered it the first year I was on it, but then they stopped covering it. Since I was on it for a year on my insurance, no one wanted to cut me off of it and that may have helped in getting the free stuff. If you can't get it that way let me know I know of some other ways

    I hope you are feeling better, and I also hope you meant you have some Forteo waiting for you when you mentioned the "boxes", is that what you meant?

    Here's a link that can explain all you could ever need to know about Forteo, and they don't pull any punches, they explain the risks, which are very low, as well. Please try to read the whole thing it doesn't take that long. When you read about the rats, don't panic, they were given 30-60 times the human dose over their entire lives, and they are predisposed to osteosarcoma. We can only take 20 mcgs which is a really small dose and only for 24 mos, where the rats got it forever, so you really can't compare that to the human dose with the risks. If you look at the statistics on osteosarcoma, it is really low in Forteo users, only one patient actually contracted osteosar, and they don't know if it was from the Forteo while there are over 300,000 people taking it. Osteosarcoma is a cancer anyone can get 1 in 100,000, but the ones who have it aren't on Forteo.

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


    Good Luck and if you have anymore questions ask away...

     
    Old 12-29-2007, 09:20 AM   #13
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    Re: Taking Forteo Advice

    Hi DesertBloom:

    Thanks so much for the information!! I've been so up and down with what to start and what not to start. I've always been a "natural" person, taking lots of vitamins and supplements over medicine. I just hate side effects, particularly some of the ones I've heard with Forteo (weight gain, weird skin, etc). My neurologist does have some boxes for me to pick up and hopefully between them and my family doc I can stay in supply. I can't afford $600 or more a month for sure.

    I'm still not feeling so great after the kypho. I know it takes time. I'll probably have to get T6 done for any real relief. Basically my whole T-spine has vertebrae that look squished down.

    I'll definitely check into a mineral metabolism doctor along with an endocrine doctor. I have an appt. with my GYN for more blood work (cortisol, hormones, etc) so maybe something turns up. I've never heard of the DARC gene, very interesting.

    If you don't mind me asking, did you get osteo before or after menopause? I'm just wondering just how many premenopausal women get this and why.

    Thanks!!

     
    Old 12-29-2007, 10:34 AM   #14
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    Re: Taking Forteo Advice

    Hi Stephi: I know "you" have to decide what to do on the Forteo, but it may help you heal faster from the kypho, isn't that why they wanted to give it to you prior to surgery?

    I've never had any side effect from forteo, but others have. I'm curious what type of skin probs or weird skin are you talking about? I have extremely sensitive skin, and never had the Forteo do anything to it, and the only weight gain was from increased ice cream consumption.

    I'm not sure exactlty when the osteo appeared but I found out when I was in my early 30's and going through sporatic menstral cycles. It's unusual for someone pre meno to get it, but have you been checked for all the secondary causes. Since you're having fx's I would want something to help stop that and forteo should do that.

    Good luck with your healing and decision.

     
    Old 12-29-2007, 06:11 PM   #15
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    Re: Taking Forteo Advice

    Hi Stephie,
    I am 30 and completed the 24 months of Forteo 2 years ago after having been on Fosamax and/or Miacalcin for 5 years prior. I did not have much of a side effect - sometimes the area where I injected made a little red circle and stung for a bit. Sometimes, after injecting, I don't know if this is just in my head, but I felt tingling in my lower back. I always injected into my upper thigh. My scores improved with this medicine a lot more than the other meds ever did. My DX prior to the forteo was hip -1.3 and spine -2.9 and then hip -0.7 and spine -1.7 after the two years. (Interestingly, my scores did not change that much after just one year, and even in hip went down from -1.3 to -1.5 after one year, then to the -0.7 which I don't know, makes me question the scores a bit? Actually, the DX prior to the forteo was taken in a different state. Maybe that was it.) However, after the forteo I did not take anything to sustain the growth and then had a baby (I wrote about that in my previous post about osteo at a young age).

    Anyway, I guess every body is different - I did not have side effects to Fosamax or Miacalcin but being that I was 26 and my scores were so low, my doc wanted me to build up while I was still supposed to building bone. I believe Fosamax and Miacalcin only help to stop loss and not actually promote growth which is what Forteo does.

    I hope this helps to give you more info. I wish you good luck on your decision and I do hope you start feeling better!

     
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