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  • My Mom, Doctor Visit Ref: Forteo and IV

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    Old 09-12-2006, 08:00 PM   #1
    CynAnn
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    My Mom, Doctor Visit Ref: Forteo and IV

    Hi!

    I took my Mom to the Doc today, in regards to my eariler post about my Mom's side effects (uncomfortable pain) while on Forteo.

    Her Doctor said there was an IV (I can't recall the name of it, but seems like it started with an "A") that my Mom could do, at the Hospital once a month if she was unable to continue the Forteo injections.

    Does anyone know about a once a month IV injection for osteo?

    Thanks!!!

     
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    Old 09-12-2006, 10:26 PM   #2
    taape
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    Re: My Mom, Doctor Visit Ref: Forteo and IV

    Did your mom decide to get off the Forteo? Do you think the doctor meant once monthly injection or infusion? I think someone mentioned Aredia that is injected or infused once monthly. Your mom might want to cal the doctor back and get the name of the medication.

     
    Old 09-13-2006, 08:49 AM   #3
    CynAnn
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    Re: My Mom, Doctor Visit Ref: Forteo and IV

    Quote:
    Did your mom decide to get off the Forteo? Do you think the doctor meant once monthly injection or infusion? I think someone mentioned Aredia that is injected or infused once monthly. Your mom might want to cal the doctor back and get the name of the medication.
    Yes, My Mom isnt going to be able to continue the Forteo. The injection was easy for her, but the side effects were so bad. The uncomfortable bone pain, upset-stomach and rapid heart rate and fatique. She only weights 94 and had lost 2.5 pounds in just 10 days since her last doctor visit. The Doctor asked her why and she said she just couldnt eat, her stomach as so upset, aches and pains, like a bad flu. The doctor felt like the side effects were against her well-being, she dosnt want her to loose more weight, feel tried and sick all the time with terrible pain that prevents her from enjoying life and sleeping at night.

    So, the option for the IV was brought up, I was with her at the Doctor's office, dyring the visit and for the life of me cannot recall the name of the IV, it was once a month, and started with an "A" I will call the doc and ask her more.

    Thanks for your reply! and thanks in advance to others that want to chime in, I'm open for any suggestions, info, etc.

     
    Old 09-13-2006, 10:31 AM   #4
    CrohnieToo
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    Re: My Mom, Doctor Visit Ref: Forteo and IV

    Yes, the only injectable/infusable I know of for osteoporosis that starts w/an "A" is Aredia (pamidronate). But I don't think it is given monthly, and I don't think it is given by injection. To my knowledge it is infused via IV over about a 2 hour period every 3-6 months depending, I believe, on the size of the dose.

    Aredia is a bisphosphonate, as are Actonel, Fosamax, Boniva; but because it is given via IV infusion it usually avoids the digestive upsets the oral bisphosphonates can cause.

     
    Old 09-13-2006, 08:50 PM   #5
    CynAnn
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    Re: My Mom, Doctor Visit Ref: Forteo and IV

    Thank you so much! It must be Aredia. That sounds right, I recall her saying it was "like Fosamax" but given in an IV. I musta got the "once a month".. wrong. Next time, I'm going to take notes to help me remember! LOL!!! My Mom is getting older and depending on me and I want to be able to recall all the details.

    Thanks again!

     
    Old 09-13-2006, 08:51 PM   #6
    CynAnn
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    Re: My Mom, Doctor Visit Ref: Forteo and IV

    Thank you so much! It must be Aredia. That sounds right, I recall her saying it was "like Fosamax" but given in an IV. I musta got the "once a month".. wrong. Next time, I'm going to take notes to help me remember! LOL!!! My Mom is getting older and depending on me and I want to be able to recall all the details.

    Thanks again!

     
    Old 09-14-2006, 10:46 AM   #7
    grammy1954
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    Re: My Mom, Doctor Visit Ref: Forteo and IV

    CynnAnn, I did the Aredia treatments for my osteoporosis for almost 2 years and then my insurance refused to pay for it. Aredia has not been approved by the FDA for treatment of osteoporosis, because it is on the market as a Breast cancer drug, therefore, insurance companies can deny payment if used for osteoporosis. Also, it is administered every 3 months by I.V. It usually takes close to 3 hours for the I.V. to run through.

    I am glad now that my insurance stopped paying on it. I would like to suggest that you do lots of research on fosamax and Aredia lawsuits. After doing my research, I regret I ever tried to help myself with the Fosamax & the Aredia. Did they help me? Actually, I got GERD from the year of Fosamax. I have it so badly I now am suppose to take 3 forty milligram of Nexium a day and a 300 mg. of Zantac at bedtime. I had never had indigestion or GERD in my lifetime of 50 years before taking fosamax.

    I saw an Orthapedic doctor last Friday because I have another vertebrae fracture in my Thoracic spine. He said that I had severe osteoporosis. He ordered a complete nuclear body scan. But again, this tells you that the meds did not help me. I have taken calcium & did the hormones for 15 years and I still have severe osteroporosis.

    Lots of luck to your Mom in whatever decision she makes for her osteo treatment.

    Last edited by grammy1954; 09-14-2006 at 10:46 AM.

     
    Old 09-14-2006, 02:18 PM   #8
    CrohnieToo
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    Re: My Mom, Doctor Visit Ref: Forteo and IV

    CynAnn, you might want to consider taking a small handheld tape recorder w/you when you go to your mom's doctor appointments w/her and ask if he/she minds your recording your conversations or at least his instructions so that nothing is forgotten or remembered wrong. (You can buy one for about $25 at K-Mart, Radio Shack, etc.)I had one doctor who carried one in his breast pocket and whipped it out at the end of our visit and dictated his notes whilst we were there. A couple of times that worked out especially well as we were able to correct one or two things he was dictating incorrectly.

    I forget if you mentioned which type of doctor is treating your mom's osteoporosis and/or if he/she is an Endocrinologist. I've had two Endos now (new one is closer to me, the other was an hour drive one way) who put me on scripted high dose of vitamin D once a week. I can't take a calcium supplement as it constipates me badly, even at just 500 IU a day. All of the clinical trials testing the efficacy of the various osteoporosis drugs from Fosamax to Forteo have involved also taking calcium and vitamin D during the trial as well as the trial drug or placebo. Even tho I can't take a calcium supplement and was taking only the high dose of vitamin D and Forteo in just 10 months of Forteo therapy I gained bone density almost back to my 1996 DEXA results which is when I was first Dx'd w/osteoporosis. And we are reading more and more about vitamin D deficiency in the general population. It is something you might want to discuss w/your mom's doctor. Maybe it would help in your mom's situation. (I did not test vitamin D deficient but both endos still recommended and scripted it).

    By the way, I did have one infusion of Aredia before I started the Forteo. I was started at a 2 hour drip rate. I experienced VERY MILD tingling at the lips and wrists, so mild I almost didn't even mention it to the infusion nurse. Still, the drip was slowed to a 4 hour drip rate and I had absolutely no problems. But then when Forteo became available I opted for the Forteo instead and fortunately have done wonderfully on it. I'm sorry your mom had problems with it. Just shows to go you, what works for one doesn't necessarily work out well for another. Good luck and God bless to your mom and to you.

    Last edited by CrohnieToo; 09-14-2006 at 02:25 PM.

     
    Old 09-14-2006, 11:28 PM   #9
    CynAnn
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    Re: My Mom, Doctor Visit Ref: Forteo and IV

    Thank you so much for the replies and very helpful advice. I will do some research on Aredia, it seems it can often do more harm than good. And the advice in taking a small hand-held tape recorder to the Doctor's visit, is an excellent idea!!! Thank you!

    Right now, My Mom is doing great, she hates the IV idea and the doctor suggested "ok, lets try the Forteo every other day and see how well you tolerate it..." and so far - so good. She did an injection on Tues and another today (Thursday) and hasnt had any side effects like she was experencing with the once aday injection, maybe it was just too much for her. She is so petite (only 94 pounds) and has a really hard time with meds. (low tolerance, stomach problems, etc.)

    Thanks again for all your help!

     
    Old 09-15-2006, 10:22 AM   #10
    CrohnieToo
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    Re: My Mom, Doctor Visit Ref: Forteo and IV

    I'm wishing your mom continued good luck w/the alternating days Forteo!!!! And God bless as well.

     
    Old 09-15-2006, 04:07 PM   #11
    judynearottawa
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    Re: My Mom, Doctor Visit Ref: Forteo and IV

    Quote:
    Originally Posted by CrohnieToo
    Yes, the only injectable/infusable I know of for osteoporosis that starts w/an "A" is Aredia (pamidronate). But I don't think it is given monthly, and I don't think it is given by injection. To my knowledge it is infused via IV over about a 2 hour period every 3-6 months depending, I believe, on the size of the dose.

    Aredia is a bisphosphonate, as are Actonel, Fosamax, Boniva; but because it is given via IV infusion it usually avoids the digestive upsets the oral bisphosphonates can cause.
    Hello to you CrohnieToo..this is judynearottawa and I also have heard of the drug that is infused, and in ottawa here, it is on our medical system so very affordable , for me Forteo is still about a thousand dollars a month so I am going to get the infusible treatement I think, or win the lottery to afford Forteo in Canada which is still so expensive (they call it experimental here) I think that I need to know more about which one to take,as I was on Bisultphonates for five years but they did not help too much, spine is now minus 3.2 and I am 58 now. Well, thank you for any new information ..about what to do.

     
    Old 09-16-2006, 07:20 AM   #12
    CrohnieToo
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    Re: My Mom, Doctor Visit Ref: Forteo and IV

    Hey, JudyInOttawa, CrohnieToo could go by JudyInMichigan! The Aredia (pamidronate) that is the infusable I was mentioning is a bisphosphonate. Just an infusable version of the oral bisphosphonates. I assume you also take a calcium and vitamin D supplement w/your oral bisphosphonate? Why not discuss w/your doctor taking a higher dose of vitamin D, a scripted dose which is higher than you can get OTC? I tend to think that the high dose of vitamin D my Endos put me on had a great deal of influence on my excellent response to Forteo. I know the vitamin D can't do it on its own since I was on only the high dose of vitamin D for a year before starting the Forteo, but as good as Forteo can be, it is unusual to have as good and as fast a response to Forteo as I was fortunate to experience. I was on SCRIPTED 100,000 IU vitamin D weekly for a year prior to starting Forteo and which was just recently reduced to 50,000 IU vitamin D weekly. It comes in a gel capsule and is quite inexpensive.

     
    Old 09-16-2006, 08:26 AM   #13
    judynearottawa
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    about Vitamin D capsules from judynearottawa

    Quote:
    Originally Posted by CrohnieToo
    Hey, JudyInOttawa, CrohnieToo could go by JudyInMichigan! The Aredia (pamidronate) that is the infusable I was mentioning is a bisphosphonate. Just an infusable version of the oral bisphosphonates. I assume you also take a calcium and vitamin D supplement w/your oral bisphosphonate? Why not discuss w/your doctor taking a higher dose of vitamin D, a scripted dose which is higher than you can get OTC? I tend to think that the high dose of vitamin D my Endos put me on had a great deal of influence on my excellent response to Forteo. I know the vitamin D can't do it on its own since I was on only the high dose of vitamin D for a year before starting the Forteo, but as good as Forteo can be, it is unusual to have as good and as fast a response to Forteo as I was fortunate to experience. I was on SCRIPTED 100,000 IU vitamin D weekly for a year prior to starting Forteo and which was just recently reduced to 50,000 IU vitamin D weekly. It comes in a gel capsule and is quite inexpensive.
    Hello ..to you JudynearMichigan, Crohnietoo ...I really appreciate your tip about vitamin D capsules ...I have become quite discouraged as my endocrinologist became ill (he ws a wonderful doctor) and is no longer practising so I have been bumped around a bit, so have lost the follow up that I need. I have to be proactive and find myself a good doctor now, of course they are all good, but I like endocrinoligists and mine did the XLaps test and he used the results to plan my therapy. What tests should I be looking for in a doctor's plan? Right now I have no one really looking after me as my musculoskeletal doctor said at Christmas "well, come back when you have a fracture!" as I told her that the 18,000 dollars (my med plan does not pay for forteo here as it is called experimental in Canada) ...I did not have ready access to the 18.000 dollars required, but I could mortgage my house and have hestitated on that, thinking that something else might come along, but I guess the Aredia is not for me as I took Fosamax for five years and still kept going down in bone density. My gynocologist has me now on Estrogen and Progesterone (hot flashes etc ) so she thinks that might help the osteo ..not sure what I think ..but I am taking it. Any information very helpful and yes, the Vitamin D sounds great, no sun here at all ..I take 1000 mg in a pill just a vitamin, but does that help? My D levels have been a bit low in the past when my previous endo did the blood work (Xlaps) ...I thank you so much, my name mate ..judyinMichigan....you are so knowlegable and every bit of information makes a big difference for me. Oh yes, about the Eli Lily people, they are very nice to me, I have bought last year two months worth of Forteo (one package expires Decemeber first this year) so I guess I should take it, just two months worth, is that a good idea? It is in my fridge, and of course I could just go ahead and buy the rest ..I am not poor enough for Eli LIly to help me with "their help program". I guess I might just have to face it and buy the rest of Forteo. I read the Myth of Osteoporosis and liked the book and began to wonder after if it all is that necessary and that I should work out more, walk, get in the sun etc. Advice most welcome. I need a new endo doctor as you can tell am quite unsure of what I am doing. Thank you for any new knowledge or advice .Hope you and your Mother are doing well. judynearottawa

     
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