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  • Help! Don't think I can Forteo anymore...

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    Old 06-28-2007, 11:45 AM   #1
    Kathy1813
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    Help! Don't think I can Forteo anymore...

    I have quit taking Forteo - a little over a week ago. I had started taking it right before bed as some of you suggested so the nausea I was having would happen when I was sleeping. However, for me, it went right into the next day. Nausea, didn't want to eat and just felt downright awful. I also had heart palpitations, some constipation and leg cramps. I lost 4 lbs. during this time. I am being treated for a lung infection (long term antibiotic therapy) and I just can't afford to lose any weight. I am very thin and only weight about
    104 as it is. I quit on my own and am gradually feeling better and am able to eat now and have gained back between 2 and 3 lbs.

    I can't take anything like Fosamax anymore on account of my espophagus. I did so want the Forteo to work, but I know I can't keep going downhill everyday either.

    My T-scores are awful - in the -4.7 range (don't have it in front of me at the moment), have already had at least 3 fractures that we know of. I am so tired and frustrated not knowing what to do.

    I am going to make an appt. with my doctor, but I know he won't tell me anything that I don't already know. You all seem to know more than the average doctor does.

    Any suggestions from you good ladies out there?

     
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    Old 06-28-2007, 02:12 PM   #2
    tulsatime
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    Re: Help! Don't think I can Forteo anymore...

    Kathy,
    I completely understand the frustration. The best thing for me was reading, researching and studying everything I can find on osteo and health. We all have to make our own informed decisions. I made my decision after gathering all the information coupled with intuition. If you feel good about the Forteo...maybe the prescription was made wrong - like to strong or something- maybe the pharmacy would replace it with a fresh dose?
    Wishing you the best

     
    Old 06-28-2007, 02:12 PM   #3
    osteoblast
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    Re: Help! Don't think I can Forteo anymore...

    Kathy-I am sorry to hear that you have had such problems with Forteo. I think I am one of the few here to have had headache, dizziness, severe loss of appetite from forteo. I had these problems bad when I took the forteo in the afternoon.I couldn't force myself to eat much for dinner, maybe something bland like oatmeal is all I could take.I could barely keep my weight on - I weigh 115. My first endo who prescribed the forteo did not tell me when to take it . When I told her about the dizziness and loss of appetite she wasn't really interested. Based on what I read here , I asked my next endo and she said take before bed. She looked at me quite surprised that my first endo hadn't told me to take before bed. So, unlike you I think I now sleep through these issues and when I wake up I am ok. Although, if I have trouble falling asleep I can feel the effect of the forteo- the dizziness and a headache are the usual.

    Based on what you are saying I wonder if you are having hypercalcemia due to the forteo. If you research hypercalcemia to me it sounds alot like what you were experiencing. I went mildly hypercalcemic with forteo. The blood test showed calcium approx. .5 out of range on the high side. The endo said cut calcium supp by a third. It seemed to help for a short time but I had other issues from my thyroid that may have complicated this I have now learned. I really feel that given your t score( why don't you check them and post them) forteo might be of significant help to you if you can find a way to tolerate it. If your doc isn't knowledgeable you might not be getting the help that you need and losing an important opportunity for help. In my journey I have really seen the difference that a smart, helpful doc can make and the frustration and anxiety that ensue when you feel your doc doesn't know or doesn't care . To me it seems that with your t-scores you should be getting the help of either an endo with alot of exp. with osteoporosis or a Bone Mineral Metabolism specialist.

    My pcp has now referred me to my third endo. I also have hashimoto's autoimmune disorder and I am hypothyroid. The second endo had really not helped me on the hypothyroid although she was good with the osteo. So, I am now on my third endo and I am a happy patient. This endo can do both the thyroid and work on the osteo. This fellow just told me that my mild hypercalcemia is effected by my thryoid level being out of balance which he says we are going to get right. So these things are very intertwined and complicated to say the least. When I check at the thyroid board, this kind of churning through endos is very common. These matters are complicated and if someone isn't helping you , people know they have to get out and find a new doc so they can feel better. It's as simple as that. The thyroid affects your whole physical and mental being so tolerating sub par medical service cannot be done for long unless you want to be functioning at a really low and dangerous level.Your heart and brain etc. can be damaged.

    When you had trouble tolerating the forteo, it would have been great to have a blood test and had your calcium level checked. If you were carefully monitored and helped I would think going back on forteo would be a big benefit to you. Again, a good doc , who is involved, could be your partner in this project. Also, maybe a nutritionist to help you plan how to structure you daily intake so that you maximize the protein and calories to keep the meat on your bones and to be sure you are getting the nutrients that you need. I think there is hope and help for you but you might just have to push to get what you need. And, I know that when you feel like you can barely function it is hard to push , but you have got to do it to get where you need to be.

    And, I should mention you have access to a really great support group here. That will be a big help to you as well. Sorry this got long but I feel it's important for you to know that others have had similar reactions and that it's not always easy to find the help you need. But the struggle is worth it!!!!

    Later edit:
    P.S. As DesertBloom says in the next post, of course, if it just isn't right for you then it's not right. I just hoped that you had given it an adequate chance.

    Last edited by osteoblast; 06-28-2007 at 08:22 PM.

     
    Old 06-28-2007, 07:45 PM   #4
    DesertBloom
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    Re: Help! Don't think I can Forteo anymore...

    Hi Kathy: Sorry to hear about all the problems, I was hoping they would go away, since Forteo is so good a growing new bones. You can only do what you feel comfortable with, and what your body can handle. I'm again sorry it didn't work out.

    When you take it at night does the nausea last "all" of the following day, or just a certain amount of hours into the day. The reason I ask, is maybe if the nausea only lastes say 3-4 hours into the next day would taking it 3-4 hours before bed help any? I had to do this with another type of med that had different side effects which I took at bed time. This was a med that was helping nerve pain a lot, but it was causing weird sensations (anxiety, nervousness) which I couldn't handle. The thing was that the side effects would go away around noon of the following day, so I tired taking it several hours before bed time to see if I could still take it. This worked, but it took several different time adjustments to get it right before I could get the side effects to disappear or only last 1 hour. I hated giving up on something that was helping the pain, but the side effect was horrible. So if this is an option only you would know, but I thought I would mention it.

    I'm doing well on the Forteo and posted my new scores earlier, which are quite an inprovement. I wish you could figure out a way to continue it, but if not, that's understandable. Is there any way you could take something to counteract the nausea/heart palps/cramps? I know it's annoying to have to take meds just to combat side effects, but since the Forteo could really help it might be something to consider. I have heart palps and leg cramps too so I know how it is, but I take things for both of these problems so it's not so bad. My cramps and heart probs have been around for a long time so I had to find something to help it out. I had a similar situation with nausea on another med, that I had to take, and was able to control that with anti nausea meds. What I used for these problems were all natural products so I wasn't adding meds to the problems.

    Good luck, and don't beat yourself up if you just can't take it...

    Last edited by DesertBloom; 06-28-2007 at 07:47 PM.

     
    Old 06-30-2007, 12:51 PM   #5
    Kathy1813
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    Re: Help! Don't think I can Forteo anymore...

    Thanks so much for your replies.

    Osteoblast - I have been wanted to go to an endo doctor, but here you can't see one without a referral from your doctor even though my insurance doesn't require one. I go to a large clinic here and have been going here for the last 35 years or so. The thing that is so great is that all of your information is together in one place. Even if you go to a specialist, the info goes into your file for the other doctors to see. My doctor is not very good on referrals. I think he cares - but he just doesn't know enough about osteoporosis and the drugs you take for it. I asked the nurse about the calcium and she said that my calcium level was okay. This was from a CBC blood test. Would that be okay? I don't know.

    I gave you the one T-score that I remember and have been searching for 2 days for what they sent me in the mail and just can't find it anywhere - otherwise I would post those scores for you. I'll keep looking but may have to get another copy.

    I want to give the Forteo a chance too. That's why I need to see someone who maybe knows more about it. I have also seen a rheumatologist for the osteo but I really didn't want to go back to him. I don't really think he cares one way or the other what I do and he certainly doesn't help me. He only sees me for a few minutes and then he is out of there.

    I need to call someone on Monday. I may just make an appt. with my regular doctor and ask him about referring me to the endo and see what he says. I am not too assertive with doctors - I hate to be a pain and a bad patient, but I also need some answers. He also told me my thyroid is okay, but I don't know how he knew that. Can you get that from just a blood test?

    Thanks again for your reply. Really appreciate it.

     
    Old 06-30-2007, 01:01 PM   #6
    Kathy1813
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    Re: Help! Don't think I can Forteo anymore...

    DesertBloom - To answer your question - when I took the Forteo before bedtime, the side effects were still there but not as bad when I woke up and really lasted all day. Then that evening I would give myself another shot and I would go through the same thing, but each day it got just a little bit worse. The last evening when I was getting things ready for the shot, I felt so weak in my legs and just had to hang onto the table and that is when I just decided not to take one that night.

    I do want to take this and I do want to give it another chance - but now I hate to have to buy my own this time (I had a free one before for the class - they gave me one) and if I still can't take it, I have just wasted so much money. I am on Medicare and just have one of those Medicare Prescription cards and I have to pay I believe 30% of the price and than when the ins. company and I have paid something like $2,500 then I have to pay everything myself until I reach $3,850. So I hate to waste one of the pens.

    Another problem I have is that I am very sensitive to many medicines. So far, they have not found anything to help me with nausea - it has either made the nausea worse or makes me very sleepy so I can't function.

    Sorry I didn't get back with everyone sooner, but I guess this is something I just haven't wanted to deal with right now. I know I have to but I just needed a few days from not thinking about it all the time.

     
    Old 06-30-2007, 01:47 PM   #7
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    Re: Help! Don't think I can Forteo anymore...

    Hi Kathie: Believe me I know how you feel, there are plenty of meds I just can't take either, and had to give up on them. The last thing you need to do is to worry yourself over this.

    I have Medicare Part D too, and am in the coverage gap/donut hole "also" but I'm getting my pens free from my dr until I'm out of the 3850.00 gap. I've been in the coverage gap for 4 months now, and luckily my dr provided the med, because she doesn't think I have the option of stopping it. On the other hand I'm not having the problems that you are so it's a different situation. Just remember that your dr should provide the pens for you until the insurance kicks back in, "if" you should ever decide to try it again. If it wasn't for the Forteo, I wouldn't be in this coverage gap either. Just 3 refills of Forteo puts you in the coverage gap that starts at 2400.00.

    I purchased a plan, that cost a little more, that covers generics during the gap, so when I get out of that, my insurance will go back to paying for the Forteo, with a copay price (for me) of 30.00 a month. I also purposely choose a plan that covers Forteo outside of the gap, so I only have to deal with it for part of the year. I really don't want to get started on how unfair this Part D plan can be. There are a lot of people left in the cold during this gap, but I found out that if you don't go and get the samples, which are out there, you're only hurting yourself, easy for me to say right . I also have other meds I have to take for glaucoma that only come in brand name, but I get the samples from my eye dr so I don't jeopardize my eye sight. Each eye drop I have to use daily is over 100.00 a piece, so I get them from my eye surgeon until the gap is over.

    I explained this whole Medicare situation in another thread about Forteo and Ins Coverage, so I know what a pain it truly is. Okay my rant is over

    Good luck, and don't worry about it if you can't take it anymore, you tried your best!!!

    Last edited by DesertBloom; 06-30-2007 at 01:58 PM.

     
    Old 06-30-2007, 04:21 PM   #8
    DesertBloom
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    Re: Help! Don't think I can Forteo anymore...

    Hi Kathie: There was just a couple of other things I forgot to mention. If you had blood tests done before the Forteo, like you mentioned, then that would explain how the dr knew your Calcium and Thyroid was normal. There are many test for different glands etc that are determined through blood tests. I'm glad your Thyroid is okay, and they probably checked your Parathyroids, vit D, magnesium, and phosphorous as well.

    Good luck with the lung infection, that must be tough. I'm one of those people who have a terrible time taking antibiotics, and luckily I don't have to take them very often. I get really sick from them and my mom was the same way. Actually the side effects you're getting from the Forteo are almost exactly like the ones I get from anti, so you see, we are all different in what we can take.

    I don't know if you have to take a lot of meds, but you might want to consider upgrading your Medicare Part D plan next year to a Enhanced or Premium plan... They cost a bit more a month, but it really lowers the copay price on all the different meds. If I had gone with the basic plan at Humana, I would be paying what you have to for the Forteo (30% of retail) which for me comes up to about 180.00 a mo like you said. When I'm not in the coverage gap, my Forteo is 65.00 a month with the premium plan, and then drops to 30.00 after the gap. In the end the more expensive plan saves me money, because I have other expensive "brand" name drugs I have to take so the cost savings is definitely worth it for me.

    Don't worry about the Forteo, if you can't take it, you tried and that's the important thing. Have you thought about Fortical nasal spray? I don't know how much it costs, but it can't be as expensive as the Forteo. However, if you have any allergies to fish (salmon) then you wouldn't be able to take that either, but you could ask about it.

    I hope your antibiotic isn't real expensive because I know some of them are over 400.00 a mo retail.

    Good luck with whatever you decide to do. If you have any other questions just ask.

     
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