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  • Newly diagnosed: What to do

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    Old 09-13-2002, 03:29 PM   #1
    marciakeeney
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    Post Newly diagnosed: What to do

    I am 53 years old, 1 year without periods, and on no medications. I have a bone-healthy lifestyle and few risk factors. Yet when I had my first bone density test a week ago, I found that I have osteoporosis with a T score of -3 and a Z score of -2. Not good. My health professional wants me to take Fosamax or Evista. I am very concerned with the side effects I have read about and the lack of long term studies on these drugs' safety. Has anyone tried nasal calcitonin? What results and/or side effects have you experienced. I would love to be able to treat this with lifestyle modifications and would do nearly anything to avoid medication, but I fear that the damage is too profound for that to be effective. I already take adequate calcium, vitamin D, and regular weight-bearing exercise. I am doing a lot of reading and plan to have a powwow with my doctor soon. Any suggestions or advice would be welcome.

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    Old 09-13-2002, 07:32 PM   #2
    blondegal
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    Finding out I had low bone density was a shock but after that wore off I had to decide what to do about it. I have found that Fosamax is not all that bad - I've been taking it for only 2 mos. though so it's probably much too early to tell. But as far as side effects, I've done okay after about the first two weeks which were not that nifty. You have to follow directions exactly though for taking it. My body seems to have settled into it okay. Several women on another Osteoporosis message board have had some gains after taking this type of drug (Bisphosphonates) which certainly gives me hope.

    Ann Richards is the spokesperson for Ely Lilly the company that makes Evista and she said last night on Larry King Live that she no longer has osteoporosis in her spine after taking the drug.

    I only have experience with Foxamax and I'm not due for a bone density test again for about a year. I am also walking everyday 4 miles and eating a well balanced diet with calcium plus MG and D supplements - all this is the recommendation of my obgyn.

    My very best wishes to you. Blondegal

     
    Old 09-14-2002, 04:50 AM   #3
    bjg
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    i am glad to read about ann richards..i had not heard of anyone on evista that had any success..i tried fosamax and actonel and had urinary problems..but each person is different.im sure many women take them with no problem..i am now on evista..i tried all of these drugs reluctantly...fearing the cure to be as bad as the disease..i am on evista 4 mos..i have some hair loss that started one month ago..its not a known side effect of evista so i dont know whats going on..my dr checked my thyroid and said it was ok....i would say give the meds a try..see how they work for you

     
    Old 09-16-2002, 08:56 AM   #4
    apachewoman4
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    I too just found out the my bone density in my spine is very low. I've always drunk a lot of milk and hate fairly healthy. My doctor has put me on Didrocal. Have you heard anything about it? I'm just new to this bulletin board and am not sure about what I'm doing. Would like to hear from anyone with knowledge of side effects of Didrocal.

     
    Old 09-16-2002, 11:26 AM   #5
    bjg
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    i never heard of didrocal but i found this on line
    Etidronate/calcium
    (Didrocal, United States and Canada)

    More drugs used for Osteoporosis.

    Use:

    The etidronate and calcium combination is used to treat osteoporosis and bone
    metabolism problems.

    How It Works:

    The bisphosphonate, etidronate, increases bone turnover shifting the balance
    between bone formation and resorption towards formation. The calcium is the "raw
    material" the body uses to form the bone.

    Side Effects:

    Stomach irritation, gas, and constipation may occur. The etidronate may ironically
    interfere with the way the bone mineralizes and the crystal formation. Brittle bones
    are the result. It is for this reason that the combination is sometimes given
    intermittently.

    Cautions for People:

    People need sufficient quantities of the raw materials needed to build bones -
    calcium and vitamin D. It is for this reason the combination makes sense, however
    even with the calcium content, people may need to take supplementation.

     
    Old 09-18-2002, 09:07 AM   #6
    marciakeeney
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    Thank you for all of your responses to my query -- I welcome more should anyone else read this post! It is helpful to hear from people who have some experience with this. I really do think, though, that we are guinea pigs for these drugs such as Fosamax and Evista -- they haven't been around long enough for long term studies on safety; even their know side-effects are shocking. I fear what they are going to find out 5 or 10 years down the road, that they don't know yet, that could negatively impact our health. I meet with my doctor tomorrow. I have read Strong Women Strong Bones by Miriam Nelson, The Hormone Book by Dr. Susan Love, The Osteoporosis Book by Lane, and The Wisdom of Menopause by Christiane Northrup. I have a couple more coming by inter-library transfer. They have been helpful. Also have gotten a free packet of info from the Natioanl Osteoporosis Foundation and have surfed the net a bit. I was wondering, though, what other boards you ladies have posted on and gotten info - one of you mentioned another board... Although I am getting a certain amount of info overload from researching all this, I don't want to miss important input that might help me with my decisions. Thanks again.

    Marcia

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    Old 09-19-2002, 11:33 AM   #7
    apachewoman4
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    Hi Marcia, I know what you mean. Look at what they are finding out about over-hormonalizing women now. Take the HRT was supposed to keep us young and do all kinds of wonderful things for us. Now we find out differently. It can actually be causing cancer in some cases. I wish I could find out what kinds of weight-bearing exercises would be best for my spine. If you hear anything, let me know. Thank you.

    Quote:
    Originally posted by marciakeeney:
    Thank you for all of your responses to my query -- I welcome more should anyone else read this post! It is helpful to hear from people who have some experience with this. I really do think, though, that we are guinea pigs for these drugs such as Fosamax and Evista -- they haven't been around long enough for long term studies on safety; even their know side-effects are shocking. I fear what they are going to find out 5 or 10 years down the road, that they don't know yet, that could negatively impact our health. I meet with my doctor tomorrow. I have read Strong Women Strong Bones by Miriam Nelson, The Hormone Book by Dr. Susan Love, The Osteoporosis Book by Lane, and The Wisdom of Menopause by Christiane Northrup. I have a couple more coming by inter-library transfer. They have been helpful. Also have gotten a free packet of info from the Natioanl Osteoporosis Foundation and have surfed the net a bit. I was wondering, though, what other boards you ladies have posted on and gotten info - one of you mentioned another board... Although I am getting a certain amount of info overload from researching all this, I don't want to miss important input that might help me with my decisions. Thanks again.

    Marcia


     
    Old 09-20-2002, 12:17 PM   #8
    marciakeeney
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    Thanks for your note, Apachewoman. Re exercises to help your spine, I have read that all weight-bearing aerobic exercise benefits your spine bone density (this was from Strong Women Strong Bones by Miriam Nelson which is an excellent newer book that outlines a whole exercise and diet program to prevent and treat osteoporosis - available from ******.com for $11.16). I went to the doctor yesterday to discus my BMD results. We discussed drug treatments and the pros and cons of Fosamax, Evista, and Miacalcin (calcitonin nasal spray). He stated that last summer's results on HRT studies had shown that that HRT is not very good as a bonebuilder. He thinks Fosamax is most effective. I told him of my concerns over the side effects and lack of long term studies on Fosamax and Evista, and that if he thought I absolutely must have something, I would choose the Miacalcin because it has been around longer and causes less nasty systemic side effects. He "cut me a deal" (his words). He recognized my motivation to modify lifestyle and my hesitation on these drugs. So he said to go for 6 months full-bore on 1500 mg/day of calcium plus D, really work on weight bearing exercise daily and in 6 months we will re-evaluate with a fancier DEXA scan of the spine and hip (my current scan was a CT of the spine). He said it is possible that there could be error in my BMD readings. If I am improving or maintaining after six months, great. If I am losing bone, then I will go on Miacalcin. So I am fairly happy with that plan. I asked him about checking into possible other unknown (by me) medical probs that might be playing into the loss of bone since I don't have tons of the usual osteoporosi risk factors other than my mother had it. He said they would look into that in 6 months. I am thinking, why wait on that? So I may call him back and have him check me for parathyroid, thyroid, or whatever other things could be causing this. I am pretty motivated to do whatever I can lifestyle-wise to improve things. So that is the latest. I welcome any comments from any of you out there. Thanks.

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    Old 09-23-2002, 06:49 AM   #9
    apachewoman4
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    Good to hear from you, Marcia. I was reading the booklet that came with my Didrocal kit. It states that Didrocal is the first nonhormonal osteoporosis treatment that increases spinal bone mass. My mother died of breast cancer and for that reason I have never taken hormones for hot flashes when I was going through menopause. And boy, did I have hot flashes! Like every half hour I was soaking wet. I still get the occasional hot flash but it's a lot better now. This getting old is no walk in the park but I guess it's better than the alternative, eh? I bought 5 lb. weights but have no real idea of what I'm doing with them other than to lift, stretch and repeat the actions. I also walk 2-3 miles a day. Hope to hear from you again.
    Apachewoman4



    [This message has been edited by apachewoman4 (edited 10-30-2002).]

     
    Old 09-25-2002, 07:11 PM   #10
    wrdtravl
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    I was just diagnosed today - I'm 53, no risk factors other than not drinking milk, and I wonder if this can really be true. Has anyone heard of a misdiagnosis? (wishful thinking)

    Thanks - It's nice to know I'm not alone

     
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