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    Old 07-22-2007, 07:03 PM   #1
    alisabc7
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    forteo side effects

    Hi--I have just started forteo and am wondering if anyone has found the same side effects: strange, vivid dreams and also extreme lack of energy. I can barely move my body when I wake up in the morning.
    Anyone else find these effects?

     
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    Old 07-22-2007, 07:21 PM   #2
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    Re: forteo side effects

    I took it for 2 years and didn't have any noticeable side effects. Sorry to hear your having side effects. Have you reported this to your doctor yet?

     
    Old 07-22-2007, 07:37 PM   #3
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    Re: forteo side effects

    Hi: I've been taking forteo for 14 mos, and haven't had any side effects, except the red blotch you occasionally get from the injection. I agree with taape you should talk to your dr about your specific side effects. It's too bad you are experiencing these problems; is there any way it could be coming from something other than forteo, like something you just started doing, or taking or a possible virus? You might want to read about the side effects in the literature you rec'd with the forteo and see if these are listed. I don't recall reading about these, but that doesn't mean you are just having an unusual effect. You can always call the 800 number listed in the literature to talk to one of the nurses/reps, they are very helpful, and may be able to give you more info, like whether or not these types of problems were ever reported.

    What time of day do you give yourself the injection? Is it before bedtime?, if so maybe switching to morning would help. I have to admit the vivid dreams effect is the first time I've heard that one. But call and find out, you may be having an unusual effect. Personally vivid dreams wouldn't bother me, but being tired all the time would.
    Good luck...

    Last edited by DesertBloom; 07-22-2007 at 07:39 PM.

     
    Old 07-23-2007, 11:03 AM   #4
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    Re: forteo side effects

    Hi alisabc7, I have been on forteo since July 12th and I can identify with what you are feeling right now in regards to lack of energy. Initially I didn't want to mention it because I felt it may just be the stress of giving myself the injections etc. I love being out in my garden and working outdoors from dawn to dusk, I am finding it very difficult to do the things I did before because of lack of energy, that was never a problem before forteo. I don't have vivid dreams, but I do have a constant lightheadedness, dizziness, it feels like I am walking around in a fog, a feeling of being unwell. I did call the nurse at forteo and she said she was not at liberty to give any directions on care, told me to call my doctor. I called her to find out if that was a side effect that was reported, she said it was. She did say that everyone is different in there reaction to medication. I asked her if I should discontinue the injection for one evening to see if that made a difference, again would not give me any medical advice whatsoever. Please know that I personally have alot of empathy for you, I am going through some side effect myself. Somehow, it doesn't make sense for me to not have a quality of life that I so enjoyed before my injections of forteo. I did however feel maybe I needed to give my body time to adjust, but....... there are so many on this healthboard that have not had any side effects whatsoever from forteo, and what a wonderful gift that would be. I don't know yet what I will do, I do know that I cannot go around feeling dizzy and lighheaded, I so wish you well, we all want a quality of life no matter what the diagnois may be. Initially I was going to go the natural route after reading the book "the myth of osteoporosis." but my doctor said what all the pamplets amd brochures say, " I better by safe than sorry." Oh Phooey!!!!!! by the way, I take my injections at 9 p.m. every evening. I initially started the injections because my fear of not being able to work out in my garden with my birds and flowers was greater than taking the forteo, now this dizziness is keeping me away from what I love to do. Take care!!! Blessings! Wildflowers

     
    Old 07-23-2007, 01:25 PM   #5
    Kathy1813
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    Re: forteo side effects

    wildflowers - I started the Forteo on June 1 and only took it for maybe 2 or 3 weeks. I was having these same side effects along with nausea and was losing weight because I just didn't feel like eating even though I tried. I also felt weak, where I felt like my legs were not strong enough to hold me up. I finally stopped taking it. It took almost 2 weeks for me to start feeling better and eating better. I do know what you are going through. I want my bones to be better but I also know I could not function like those few weeks for 2 years.

    I did finally get an appt. with an endo but I can't see him until the first part of September. I am hoping maybe that there will be tests to give me or maybe he will be able to give me some advice on what to do. It is very frustrating when it seems like no one else is having these problems.

     
    Old 07-23-2007, 03:24 PM   #6
    wildflowers
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    Re: forteo side effects

    Thank you Kathy, it's good at least to know someone else out there can identify with side effects of forteo. When you mentioned weak legs, you didn't feel they were strong enough to hold you up, that is what happened to me. The staw that broke the camels back is when I was coming down the stairs with a basket in my hand, I literally felt my legs go out from beneath me, at the time because of the dizziness, felt that possibily could have something to do with it. I said to myself, isn't this something, I am taking something to prevent a fracture and almost fell from taking something that was suppose to prevent a fracture.
    I am quitting as of tonight Kathy, !!!!! I hope I can get back to feeling the way I did prior to July 12th. I am a very energetic, outgoing, fast paced grandma, who loves her grandkids, garden, flowers and birds. I have felt terrible passing up opportunities to enjoy them because I felt so bad. I am going back to my original thought process, if I am going to risk, it's going to be about something I enjoy and that I am going to feel good in the process. It would be earier to take up sky diving or bungy jumping, or become a race car driver.
    Thanks again Kathy, I am in your corner, "this too will pass."
    Don't be afraid of your gut instinct kathy, you know your body better than anyone else, I went against my gut instinct and I will not do that again.
    I will drag out my book on " the myth of osteoporosis again" and tatoo the words on my body so I don't forget. Kathy have you read the book? Take care, please let me know if I can be of help in anyway, you are not alone. Blessings! Wildflowers

     
    Old 07-23-2007, 04:57 PM   #7
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    Re: forteo side effects

    Hi Wildflowers and Kathie: I'm so sorry you're having such horrific side effects with the forteo, that's really too bad, since I was really hoping it would help you both, and everyone else on this thread too.

    Wildflowers, I'm going to tell you what I told Kathie when she was having so much trouble, and that is don't feel alone, we all have situations like this where we can't take a medication that we really want to work or that could help tremendously. I too have had similar situations, but with other meds, and I know how frustrating it is, when you pin so many hopes on something and then have to stop taking it.

    You gave it your best shot, so if you can't take it, just try to move on to something else that might work. You can't go around being dizzy all the time, because you might fall or pass out, and then you could fracture something.

    You don't want to be like me and have to give up gardening, and other things forever, so you will have to decide what you're going to do.

    My 6 fractures tore my life apart, but I just try to keep moving forward and try not to think about all the things I love that I can no longer do.

    Good luck with whatever you decide, and Kathie I think you made the right decision like I mentioned weeks ago. I'm hoping that the forteo will prevent further fractures for me, because I can't go through any more surgeries with titanium rods and screws holding my spine together, which is why I can't bend or garden any more-oh well, c'est la vie-right?

    Hang in there 'all' of you

    Last edited by DesertBloom; 07-23-2007 at 05:03 PM.

     
    Old 07-23-2007, 05:02 PM   #8
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    Re: forteo side effects

    Thank you Desert Bloom, your response brought tears to my eyes. In gratitude Wildflowers

     
    Old 07-25-2007, 04:40 AM   #9
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    Re: forteo side effects

    Hi Wildflowers et al: I was getting spells of--not exactly dizziness--instability is more like it, or unsteadiness. I have had moments fearing my legs wouldn't hold me, too. I attributed it to worsening arthritis, and the loss of energy to high dosage of BP meds. So now I know that (a) it's not in my head, and (b) it is probably the Forteo. However, my spells are fleeting when they occur and don't occur all the time. Also, I had labs, and everything was fine (including the tests I took recommended on this forum), but my potassium was 4 points low despite the 20 mg supplement I took every day. So the doctor upped the dosage to twice daily. I am not happy with it, because it reminds me a little of bisphosphonates...you have to take it with food and plenty of water, and I think if you don't it irritates the esophagus.
    I do my injections first thing in the morning (between 7 -7:30) before breakfast. Then I read and answer emails and my first (of two) cup of coffee. I haven't felt any unsteadiness to speak of since I began taking two potassium doses a day. My energy levels drop for a while after lunch but always pick up fine during the late afternoon and evening. I attribute lower levels to age (75), and the arthritis does cause pain, and it's the PKs I resist. I have a sort of delicate stomach, so if I eat anything really acidic, it bothers my appetite. I am persevering with the Forteo, at least until I get results of the Dexa scan, because right now I feel it's the only bone meds I can tolerate at all. It doesn't bother my sleep, thank goodness. I'm sorry to know of others' side effects, but don't feel as alone now. So far mine are bearable, which I couldn't say about the Actonel!!!Blessing and best to all. I plan to post Dexa and all results when the Dexa results come back.
    Pat

     
    Old 07-25-2007, 05:08 AM   #10
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    Re: forteo side effects

    Good Morning shewolf, it really does help when others share some of the side effects they may be experiencing, it gives you a chance to sort it all out, and that it is "not all in your head." I really wanted forteo to work, I did hang in there as long as I could, unsteadiness, off balance, woozy, lightheadedness, etc. etc all of these words can mean side effects of any medication. The difference for me shewolf is I had only my not dizzy, not unsteady, not woozy, not being lighheaded before forteo to compare it with.. I knew mine was definitely forteo. It would have been harder for me persoanlly to sort it all out if I had multiple diagnosis to contend with, so I am grateful for that part of this nightmare. When you go from feeling good, to feeling totally "unwell", you look back at your meds, what you have eaten, what difference from the norm have you been doing, the answer to me was, forteo, forteo, forteo.
    The potassium you mentioned would also be a good indicator of your unsteadiness etc, my brother who had open heart surgery was low on potassium and he felt unsteady, dizzy etc until they upted his potassium, he immediately felt better. She wolf, sorting all of this out can be mindbloggling to say the least, but it's very soothing to the soul to be able to have folks out there that hear you when you type your concerns. Many of us, maybe I should just speak for myself, keep alot of our concerns, side effects away from our families, so not to overly concern them, that is why healthboards and all of you are such a gift.
    The good news for you shewolf, it is bearable, you are able to function with it all right , you are comitted to be a active participant in your well being. It's o.k. I found out to be a little more vulnerable and ask for help if I need it. I am from the older generation where you suffered in silence, bite the bullet, don't let anyone see you sweat, etc. etc. not a good thing. I have grown tremendously since I have been a part of healthboards and even though I have aging difficulties at times, I can always talk with all of you, my dear friends here on healthboards. Take care shewolf, I do apologize for rambling, it's amazing when you start typing all the stuff that comes forth. I thank you kindly for your post. Blessings! Wildflowers

     
    Old 07-25-2007, 11:08 AM   #11
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    Re: forteo side effects

    Thanks to all the replies. Makes me feel not so alone in this. I still have not gotten a copy of my last Dexa but as I said before, my score was in the -4 category. I have had at least 3 fractures that I know of and my back hurts all the time. I feel like I need to do something for my bones and Forteo is my last chance. So far I have not had any surgery. I also have a lung disease - I do exercise - walking on the treadmill and working with the stretch bands for my arms. That is all I really can do besides taking my calcium. I will keep checking back to see if anyone has any other suggestions on other things I can do for myself.

     
    Old 07-25-2007, 12:57 PM   #12
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    Re: forteo side effects

    You are so right, Wildflowers about the older generation not sharing side effects or other problems with those close to us. My husband has enough to worry him with a rare blood disease. He's coping well and doing well, and he is concerned about me, too, but I don't like to burden him.
    Kathie, did the doctor okay the treadmill? I was told it was too high impact, but there again, I also have arthritis, so maybe if I just had the osteo she wouldn't have said not to use it.
    All I'm waiting for now is the Dexa results. I was gratified to discover my calcium intake is adequate, because I can't take supplements My Vitamin D is also adequate, which is another relief. I'll take all the good news I can get, which I know applies to all of us on the forum.
    I have been doing what they call ski walking (with poles made for that purpose) and like it, but have learned not to overdo because it will cause knee and back pain (due to arthritis). I also do some dancing, and that really does perk me up no end! Being able to communicate with all your nice people is a wonderful blessing for which I thank God. I'll post Dexa results soon. Pat

     
    Old 07-25-2007, 01:12 PM   #13
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    Re: forteo side effects

    shewolf - I didn't specifically ask my dr. if the treadmill was okay, but both of the ones I go to know I use the treadmill and have not said anything against it or told me I shouldn't use it. I wouldn't know what to do if I couldn't. In the winter, it is too cold to walk outside and in the summer (like right now) it is way too hot.

     
    Old 07-25-2007, 06:07 PM   #14
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    Re: forteo side effects

    At least most treadmill surfaces have some cushioning when compared to walking outside on the pavement. I use one daily and have very low bmd.

     
    Old 07-25-2007, 11:21 PM   #15
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    Re: forteo side effects

    I've been using Forteo for 2 months and noticed I've started perspiring a LOT. I actually have sweat running down my face.

    Has anyone else had this side effect from Forteo?

    Cheers!
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    Keep passing open windows.....

    Last edited by paprbkrtr; 07-25-2007 at 11:22 PM.

     
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