<<Disclaimer: Verify this information before applying it to your situation.>>
(6) One listmate says she met a woman at dinner who took it for
Osteoporosis at her doctor's orders. The little she knows is of no help
but it is apparently something that doctors do suggest in very serious
cases. She had been an undiagnosed celiac for some time and he
felt her damage was serious.
(7) One listmate asks if I could post the replies.She has osteo also
but has never heard of this drug. They want her to take fosomax but
she is reluctant to do so. Did your doc suggest exercise? I am afraid
they will come out 5 or 10 yrs. From now and say these drugs caused
something awful. Also you are new of the diet, possible eating gf will
help the osteo, tho it has not helped her. (Yes, my doc rec. weight
bearing exercises which I do every day and also walk. Several
listmates have mentioned that the bones improve with the gf diet. My
shoulders use to hurt, but the exercise seems to have helped. This
drug was approved by the FDA in l991 -but look how long women
have taken hormone pills and now they have found out about them.
Yes, I am concerned as you are. Since I don't know how long you have
been on the gf diet, but according to Dr. Green from Columbia, a newly
diagnosed celiac should not be taking Fosamax or Actonel. He feels
that the gluten free diet and calcium supplements like Citracal Plus and
the fact that you will then absorb vitamins, etc. should be enough to
reverse the osteopenia).
(8) One listmate says she too, has osteo. She cannot tolerate any of
the medications that are taken by mouth. She has been approached
about taking this injection. She doesn't feel comfortable putting
something like this in her body, saying she reacts to everything foreign
and who knows what kind of side effects there would be. She asks that
I please keep her updated on what I learn. Dr. Murray is her doc at
Mayo and she has seen him many times. He is a wonderful doctor as
well as person. (My daughter was very impressed with him, but she
asked Dr. Murray what he thought about Aredia as my doc. had rec.
this drug. I feel that maybe he wouldn't want to disagree with another
doc - and have really wondered if this would have been his choice.
Was he the doc that had recommended Aredia for this listmate?).
(9) Another listmate says that although this drug is utilized for cancer
patients, it is because some cancer patients are at high risk of losing
bone integrity due to some cancers. This drug is a way to restore
adequate calcium levels. He believes that intravenous is the only
adequate method to introduce into the body. This is not a cancer drug
but one used in cancer patients and those diseases that may deplete
needed calcium levels. He is not certain that osteo problems
secondary to celiac sprue warrants this type of treatment. You may
want to get a second opinion, also read up as best you can with this
or any drug before consideration. He does know that the nerve/bone pain
associated with celiac is most debilitating and difficult. Good luck to
you. He attached this site which may be of some use:
http://www.tirgan.com/aredia.htm , and
http://www.centerwatch.com/patient/drugs/dru154.html . (A second
opinion is a good idea and I have already got lots of good info from all
you good people. I'm not ready to jump for this right now ).
(10) One listmate says that her doctor wanted to put her on Fosomax
for her osteoporosis, but she insisted on having blood work done,
because she does not like to take medication. Everything came out
good, except her vitamin D was low. He put her on a vitamin D drop
for about 2 months now. She had more blood work done, and is
waiting to hear from them. Since everything came out good, she is
going to try some natural products first, then get tested in another 6
months. She is praying the doc will go along with her on this. She is
too afraid of those meds, because she has already had trouble with a
hiatal hernia. So good luck, but she would get tested first. She
doesn't know anything about aredia, but it sounds pretty scary to her.
She has a very knowledgeable lady at the Health food store who
helps her a lot. Maybe you could get some advice from someone like
that. (My doc didn't even suggest fosomax because I had told him of
several friends that had problems with this drug, but the Dr. said he
thought aredia would be the best because it by-passes the stomach
and also because my intestine has been damaged from celiac. I'm
like you, I don't take medicine unless I absolutely have to. One
listmate has already suggested tri-boron which I believe is a natural
product, so I intend to check out the health stores on that).
(11) Another listmate has a daughter that has celiac sprue. She does
not, however, she does have ostseoporosis and have been getting
Aredia infusions for two years. She is happy to say that she has not
had any side effects from it. It has stopped the bone loss. She had
tried Fosomax, Myacalcin and another drug, but she was not
absorbing her calcium. Therefore the dr. decided to put her on
Aredia. She has rheumatoid arthritis and has been taking prednisone
for many years which may be the reason she has an absorption
problem. She would certainly give the Aredia a try. (I too have
rheumatoid arthritis, but I am not taking prednisone. I took it for awhile
but it didn't help me any. I have heard that prednisone is bad on the
bones. Pleas let us all know if Aredia helps you).
12 One listmate says she hopes that I have had some response
from my questions regarding Aredia. She has severe osteoporosis
and also been checking out other procedures to strengthen her bones.
She has been taking Actonel for over 2 yrs. And had some problems
but it has helped. Approximately four yrs she suffered rib fractures
which really incapacitated her for a couple of years, however, she is
now able to be up and around but still has a lot of bone pain. I live in a
small town in Missouri and have tried several endocrinologists in
Kansas City, Mo. And have not found anyone who is familiar with
celiac disease and how it is related to osteoporosis so she just kind of
doctors herself by taking Actonel and calcium and vit. D supplements.
She would like to go to Mayo but doesn't know if she is able to travel
the distance. (All you listmates out there, does anyone know of a
good doc in Kansas City, Mo. that is familiar with celiac and all the
autoimmune diseases for this lady who has severe osteoporosis. I
hope you can find a good doc that can help you and strengthen your
bones. May God bless you).
Betty Jackson
Knoxville, TN
* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *
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