HELP, Fosamax failure, I'm disintegrating!!!

Discussion in 'Fibromyalgia Main Forum' started by IntuneJune, Jun 20, 2003.

  1. IntuneJune

    IntuneJune New Member

    I’m disintegrating. Last year, 2002 my bone density revealed 14-17% bone loss (depending on the area) from the previous study of 2000. My bone density exam last week revealed “significant loss as compared to the study of 2002.”

    Last year my doc started me on Fosamax, and I take calcium. My Mom had severe osteoporosis. For that reason, in my late 20’s through my 30’s and 40’s, I was a jogger/runner/walker. While out on a run, I would mentally visualize this run was “money in the bank” building bone mass.

    Because of where I am right now with FMS, I cannot run/jog/or even walk far but do exercise five times a week.

    Beginning of March, my doc asked me not to take Fosamax until we got that chest-pain-episode-thing diagnosed on the outside chance it was GI related. Two specialists are in disagreement of sorts as to what this thing is and I still have one more test (CAT scan) to go.

    Now I am literally physically falling apart (well now---doesn’t that just go along with how most FMers feel mentally)

    HELP, suggestions anyone. June
  2. TaniaF

    TaniaF Member

    I did not do well with Fosomax--upset my stomach. Then I was put on Actonel (it was easier on my tummy, but gave me headaches)the once a week kind. Now, a slight change, taking the 5mg Actonel once a day, has eliminated the headaches. Small dose everyday works better with me than a large dose weekly.

    My aunt uses the Micaltin nasal spray for osteoporosis avoiding taking the oral pills. Maybe your doctor would approve of this spray instead.

    I wasn't aware that osteoporosis caused symtoms other than the fracture risk. Did you Mom have daily symptoms? I starting to get that curve in my back---not sure if it's the osteo or some scoliosis.

    Take care,
  3. IntuneJune

    IntuneJune New Member

    My Mom was one who fractured bones when she sneezed. She had had a hysterectomy with no HRT and was told to drink milk.

    I have been tryng to take calcium supplements even when I was in my thirties. So am alarmed I am still loosing bone mass while on Fosamax.

    Have you had bone densities????

    Is Actonel better for slowing down bone loss than Fosamax????

    Thanks, June
  4. IntuneJune

    IntuneJune New Member

  5. garyandkim

    garyandkim New Member

    Fosomax is double strength and I believe a different compound. I'm going through the scoping upper and lower next month but still taking the A.. one and 2-3 prilosec the day before and 2 days after. I started to develop ulcers on the F.. Had to stop a month and I'm sure it's the med but, the docs like to do the testing and it's a smart idea to check it out. I to had chest pain and pressure and ended up at the ER and in hospital. I have the Cardeolite stress test next week.

    Good luck and have you asked about the IV theropy it's supose to give less problems our doc said after our next dexy she'll decide which way to go.

    Good luck, Kim and Gary
  6. IntuneJune

    IntuneJune New Member

    IV therapy????I have not heard of that. I have not been to the doctor (or heard from him) since the test was done. I had, however, read my report. I don't want to end up like my Mom. She suffered so. I will do anything to help my bones. Wish I could walk!!! I simply end up in way too much pain. I do keep challenging it, but I need help with bone loss right now.

    Do you (or anyone) have any more info on iv therapy? Thanks. Would prefer to turn to dust after I am IN the ground!!!!

    Fondly, June
    [This Message was Edited on 06/22/2003]
  7. IntuneJune

    IntuneJune New Member

    Help, please!!
  8. chubby

    chubby New Member

    It's recently been discovered that vitamin K helps keep calcium in the bones and out of the arteries. There's a lot of info on the web if you do a search. Here's just one I found. I take a vitamin K supplement every day. Good luck. Chubby.

    Bone Up on Vitamin K, Reduce Risk of Fractures

    Vitamin K, known mainly for its role in blood clotting, is gaining recognition as an important vitamin for bone health. Standard thinking has always been that the body makes enough vitamin K on its own, courtesy of friendly intestinal bacteria. That's why you hear so little about this vitamin. But while the body may make enough K for adequate blood clotting, it might not be enough for optimal bone strength. Since the Recommended Dietary Allowances of 80 micrograms (men) and 65 micrograms (women) are based on vitamin K's blood clotting role, they may underestimate the body's true needs.

    The latest evidence comes from a 10-year Harvard study of middle-aged women. Researchers found that those whose diets contained the most vitamin K--at least 109 micrograms a day, well above recommended amounts--had a 30% lower risk of hip fracture than women who consumed less.

    According to the study, which appeared in the January (1999) issue of The American Journal of Clinical Nutrition, the foods that contributed the most vitamin K included lettuce, broccoli, spinach, cabbage, kale and Brussels sprouts. Moreover, women who ate lettuce at least once a day were less than half as likely to break a hip than those who ate lettuce no more than once a week.

    Vitamin K is required to make the active form of the bone protein called osteocalcin. Getting more K than what the body makes can't hurt, especially since some of the foods highest in vitamin K are also rich in folate, vitamin C and carotenoids-- all important as we age.

    Source: Environmental Nutrition, March 1999 Volume 22 Number 3

  9. elaine_p

    elaine_p New Member

    June, my mom was taking Fosamax but had to stop because of difficulty swallowing (I think). Her last bone density test, after stopping the Fosamax, was *better* than the one before, which was done after she'd been taking it for awhile.

    Just posting this because maybe you don't need to be so stressed about it?
  10. garyandkim

    garyandkim New Member

    is a program in Philly but, I'm not 50 yet. I go back the end of the month and will try to remember to write down what it's called but, I think you can look up on the web treatments for Osteo so maybe you can find it faster. Otherwise I will try and remember. I always seem to forget to take out my list when there.

    Hope you get some answers and help soon, Take care, Kim
  11. kerrymygirl

    kerrymygirl New Member

    Just want to say if you have any question of esophogeal prob. etc. do not take fosomax. I have seen to much choking even to death. Only take these meds if you are absolutely poss. you can take it, no throat etc. diff. I will not take.

    Also the nasal spray people at clinical trials were breaking bones just as fast if not faster according to pro`s part of the study. They do not know how it got approved. Plus, be leary of spraying anything up your nose more than 1 wk. It can destroy the lining or your nose. We need all the protection we can get against infections.

    I am trying to up my vitamins and natural cal intake. I had always been so active I was shocked when I got my dexa results. Just 1 more thing. I know your frustration. We suppossedly ooze cal. into our tissue instead of staying where it belongs. Tissue doe`s not utilize and causes us more problems, such as the lumping in tissue according to this seminar I went to caused from this whole ATP disruption. Made alot of sense from him anyway.

    I am so sick today I may not be making any, just giving it a shot.

    I hope you can maybe do IV. I have too much esophageal prob. to take either. So I understand, it is always something. Fosomax has helped people who can take it it also can be dangerous if you cannot.

    Take Care, Sorry about you added worries
  12. IntuneJune

    IntuneJune New Member

    I am not able to get on my computer every day.

    Chubby--I am going to figure out (sort of) how much Vitamin K I am getting. I do love greens, eat lots of fresh spinach, broccoli, etc. Have copied your article. Will research more but this saved me time, thanks

    Elaine P--am trying not to stress, but am afraid, I am loosing bone density fast. Thanks for your help.

    Kim--Will do the search. Will contact the doctor's office tomorrow also. Thank you!

    Kerrymygirl--Well the doctor stopped the Fosamax on the outside chance I had GI problems because of the chest pain I have been having. But he did state he was pulling at straws. But I'm going to investigate the IV stuff. That may provide more of a punch anyway. Thanks.

    Fondly June
  13. IntuneJune

    IntuneJune New Member

    Called the gyn office today, told them my concerns about my bone density--come to find out, they had never received a copy.

    They suggested an oste-conference with the doctor. So I have that at the end of July. I did not want to wait until September for my yearly exam. The nurse whom I spoke with said he would rather talk face to face.