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  • My 11-month progress report (Forteo)

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    Old 02-24-2007, 02:35 PM   #16
    DesertBloom
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    Re: My 11-month progress report (Forteo)

    WildFlowers: I wanted to agree with Taape and Trail on the explanations they gave on the various issues you have. I would agree that forteo was shown to statistically increase bmd at 3 mos and *throughout* the course of treatment of 24 months. Some may show gains in the first year and some the second or *both*. Bone density does not necessarily decrease after one year, and hopefully not at *any point* while taking forteo.

    Forteo is man made Parathyroid Hormone, so it's not much different than the other hormones you're referring to. BTW I'm on low dose hormones of estradiol and norethindrone (Activella) as well with the forteo. Again , forteo's active ingredient is Parathyroid Hormone, so you know what's in the injection. There are some inactive ingredients but I'm afraid I can't remember them all, except sodium acetate, glacial acetic acid, and water.

    Forteo can transiently raise your calcium level since Parathyroid hormone is the primary regulator of both calcium and phosphate in both the bone and kidneys. Serum calcium levels can *peak* in some patients at the 4th to 6th hour and return to baseline at 16 hours post dose. If you have elevated calcium you wouldn't be able to take forteo. I only had a serum (total) calcium level done before starting forteo, but after had ionized cal, 24 hr and total cal again, but I have a weird situation going on with my ionized cal only.


    Good Luck...

    Last edited by DesertBloom; 02-24-2007 at 04:36 PM.

     
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    Old 02-24-2007, 02:45 PM   #17
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    Re: My 11-month progress report (Forteo)

    Hi Osteoblast: Do you go all the way to Mayo from Seattle? What a trip if you do, or is there a clinic in WA?

    Sorry to hear your dr is so difficult, hope you find a good one on the next appt.

    The only other thing I noticed with the couple of dizzy spells with forteo, was that it happened when I gave the injection on an empty stomach. I've never had insomnia with it, and hopefully you won't either. It has never done anything to my appetite either, so it just goes to show you how different we all are.

    I haven't forgotten about the NTx score, but I'm getting another in 2 weeks so I'll post both to see if the second is different than the baseline done at 3 months and the second will be at the start of the 11 month.

     
    Old 02-24-2007, 02:59 PM   #18
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    Re: My 11-month progress report (Forteo)

    PikaB: I have another question about your future meds... I noticed that you mentioned PTH nasal spray as a possible alternative, and was wondering can you take that after you've finished a 24 month course of sub-q PTH? I've been wondering about this since I don't know how the 2 year limit is handled on PTH. Is the 2yr restriction only for the sub-q course or for all types of PTH whether nasal spray or patch when they become available? I don't think my insurance would cover any other version of it, so I guess it would depend on that and my dr.

    Last edited by DesertBloom; 02-24-2007 at 03:01 PM.

     
    Old 02-24-2007, 05:32 PM   #19
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    Re: My 11-month progress report (Forteo)

    WILDFLOWERS: Have you checked with your insurance company about whether they cover Forteo? If you DO get the ok to go ahead with the treatment (provided your pre-treatment tests come out ok), I'd advise you to check this matter out as soon as possible, as the med is known to be ''very'' expensive.

    Best of luck, whatever you decide to do ....

     
    Old 02-24-2007, 05:50 PM   #20
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    Smile Re: My 11-month progress report (Forteo)

    Wow, PikaB!

    Congrats-grats-grats! Reading your posting with results from Forteo is such great news. I have been thinking very hard of starting it. As I have a bad cold, last night I had to go to see my internal doctor, and also brought up (in my hoarse whisper) forteo along with the other Zometa (which I took 18 months ago and am overdue). She is also very interested in that, though said that she can't prescribe, so I have to bring it up again with my endocrinologist (who I am thinking of switching to one specializing in osteoporosis).

    For the posted reesponse to the shot taking and skin suffering from the shots, well, that's another thing I am not fond of, giving shots, but I already take shots every night. (And I may be right that the Forteo needle is even thinner). But as I have antiphospholipids, I have to take life long Lovenex. I used to take it twice a day, but now gladly just once night, and yes, it hurts when I put it in, and yes, I havve little bruises all over my hips and quads from taking it. But though you are in your 60's it can't hurt you badly though. I live with it, and I am in my 20's with increased bruising and bleeding and scarring with thin skin.

    Best Wishes,
    Hana

    p.s. PikaB, please keep us updated on that great news!

     
    Old 02-24-2007, 06:58 PM   #21
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    Re: My 11-month progress report (Forteo)

    Thank you montesflus for reminding me, oh my goodness, the first thing I do on monday morning is check with my insurance. After all is said and done I need to have a way to pay for the treatment. All of the information posted, answered my questions and I feel so much better, I love being well informed and all of you are just absolutely so well informed and pro active in your care and that is where I strive to be someday. I really do wonder sometimes what my mom and grandma did, they didn't have a computer and the support system I have, I really am blessed.
    I must share just a tiny little story of my visit to my doctor. I was in the room waiting for his entrance and on the wall were pictures of women all bent over and they looked over 100 years old and beneath the picture it said forteo, meaning this is what can happen to you if you do not take forteo. When he finally came in the room I told him I had one suggestion, wouldn't it be a better idea to show a woman standing tall and vibrant with the word forteo, thinking that would be a goal, instead of scaring the living daylights out of me. He agreed!!!!!!! Blessings! wildflowers

     
    Old 02-24-2007, 08:19 PM   #22
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    Re: My 11-month progress report (Forteo)

    WILDFLOWERS :

    I hope you get satisfactory answers from your insurance company, but whatever you end up doing, I wish you the very best of luck. Oh, I agree with what you mentioned about those pictures of stooped over women on the wall of your doc's office - what WAS he thinking of??

     
    Old 02-25-2007, 05:30 AM   #23
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    Re: My 11-month progress report (Forteo)

    Quote:
    ...How much calcium and d did you take a day? Would you let us know type and amount?
    I prefer to get my calcium from food. Every other day I eat a 15 oz. can of sardines or jack mackerel, high in calcium, divided into 4 portions eaten 2 hours apart. My last lab test indicated my calcium levels were a little low, so I recently started also taking a 333 mg. calcium citrate supplement. But my calcium intake was the same during 2005, when my BMD was declining prior to starting Forteo.

    Quote:
    ...I see you are in the sunbelt, are you sunning yourself on a regular basis?...
    Yes, I try to get 15 to 30 minutes of sun a day, on my torso and legs.

    Quote:
    ...Are you still doing the tai chi on the WBV?...
    Yes.

    Quote:
    ...I noticed that you mentioned PTH nasal spray as a possible alternative, and was wondering can you take that after you've finished a 24 month course of sub-q PTH?...
    I don't know. I just meant that there are various new osteoporosis drugs undergoing clinical trials, and hopefully some of them will be available if I should need them in the future. It looks like Forteo will improve my BMD to an acceptable level, so if I can just keep my BMD after that (through the alternative therapies), I shouldn't need anything more. But only time will tell.

     
    Old 02-25-2007, 09:49 AM   #24
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    Re: My 11-month progress report (Forteo)

    Thanks so much for the encouraging information PikaB!

    It is obvious from reading all posts that I am shamelessly ignorant of EXACTLY what is going on in my body! Sure...I've researched osteoporosis...and thought I was aware of most meds available...but, thru this forum, I have learned SO MUCH! My "very health conscious" daughter was not happy when two doctors decided Forteo was the best option for me. I have introduced her to these forums, and the info provided by all of you has proved so valuable! I thank you for this!

    I am also on heart medicine because of several episodes 3 years ago. A heart cath, and careful monitoring has put this health condition in the background for me now...I'm realizing the Evista did not help at all, and the increase of bone loss HAS to be my focus.

    Your expirement of treatments is very interesting PikaB. You have mentioned products I was not aware of. Thanks to you all......Pam

     
    Old 02-25-2007, 07:54 PM   #25
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    Re: My 11-month progress report (Forteo)

    DesertBloom-Yes, I did make the trip to Mayo in Rochester,MN. Actually two trips. I had a number of health issues that were ,to me, overwhelming. Mayo is an amazing place. In my case, intake with a specialist was done early in the week, as well as lab tests. The specialist then refers you to other specialists as needed. The lab test results, in my case, came back same day and then others were ordered to follow up on things seen in first results. So then I saw other specialists and the week came to a close by returning to the first doc who goes over the notes of all the other docs . For me the ability to get alot done within a week was really helpful. It would have taken me months to get the same accomplished locally. I just had bad luck with the assigment of my primary specialist. Her expertise was not the problem, it was her extremely cold-rigid manner that was hard to deal with.I was already tense and scared and her somewhat automaton like manner was unnerving and unhelpful. I'd like a doctor like Bernie Seigel-I don't know if you are familiar with his work. In any event, a doctor who recognizes that you are a person, and is warm and encouraging. I think that a doctor's attitude toward you can be good medicine or bad.
    Thank you for remembering about the ntx tests.

     
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