<<Disclaimer: Verify this information before applying it to your situation.>>
First let me apologize for being so late in posting the summaries that I
have received. I am amazed at how fast this group has been in
answering each and everyone's questions. It is so comforting to
know that someone is out there to help you. I have learned so much
from this group. I have received lots of information on osteoporosis
but it doesn't seem there are many people that take aredia for this
condition. Here is a list of each summary:
(1) One listmate says that most effective is Twin Lab's TRIBORON
PLUS, a cal/mag supplement which raised her bone density from
+1.75 to +2 in just a few months. 2 md's had recommended it to
her. Her nutritionist calls it "the perfect formula," and her new md
has taken people off fosomax and put them on TriBoron Plus.
There are no side effects., take 4 at bedtime which is when the body
excretes calcium. (This listmate has convinced me, and I will
consider this before taking aredia).
(2) One listmate suggested asking your questions at this excellent
site: http://forums.delphiforums.com/celiac/messages. She says
they are very kind & knowledgeable people there, among them
doctors, to answer your questions. There also is a GF product list,
updated regularly. She has voluntarily posted many hundreds of
GF recipes to this site.
(3) One listmate has a 4 yr. old daughter whose stomach did not look
better going on a GF diet. She switched doctors and the new dr. told
her she thought her daughter should stop consuming dairy on top of
being GF. It was amazing that all her problems went away. The
doctor said that in 6 to 12 months after being dairy free her daughter
can begin to reintroduce dairy. The daughter has celiac and will
never again have gluten. The dr. said that removing dairy allows the
intestines to heal faster and easier. Once healed, the body will again
be able to process dairy. She suggests I try this before taking a drug.
It would take a week to figure out if it helped. .Also she said that I
may need some type of calcium supplement. She is convinced that
osteoporosis is nothing to take lightly. (I just couldn't believe that milk
was so hard to digest and I couldn't give it up until my problems got
worse. My dietician put me on soy. After awhile I became allergic to
soy. Now I am drinking lactose free milk and also I have been taking
two 600 mg calcium a day. Before long I began to gain some weight.
It's a good thing that you changed doctors).
(4) One listmate says it is frustrating not knowing what course to take
in treating the osteoporosis. So many of us have thin bones due to
the celiac disease. She doesn't have any knowledge of Aredia, but did
want to offer a suggestion on healing your GI system. She has been
on a gf diet since being diagnosed in 1997. For the first year or two
she still had the fatigue and ill feeling, plus her GI system was
obviously not doing well despite the diet. She finally began buying a
"drinkable yogurt' called Kefir at her Whole Foods store. Many health
food stores carry this item in the dairy section. Her brand is Lifeway
Kefir. She gets the plain, not flavored and drink it between meals
every single day). Kefir is loaded with healthy probiotics - the good
bacteria for the GI tract, - much more than yogurt. Even though she
was lactose intolerant, she was able to drink this without any problems.
The lactose is zero because of the fermentation process. She began
to gain weight and health as the months went on. She hopes I can
try this.it will also provide much needed calcium for my bones.
(This is just what I needed. I used to eat yogurt every day but
because of the milk I had to give it up and I couldn't drink buttermilk
either and someone had suggested sauerkraut. Now I drink Kefir
daily and my stomach no longer hurts).
(5) One listmate has taken Aredia. This is going on her 4th yr. taking
this intravenously every three months. She has not had any side
effects at all with this procedure. It is a cancer drug, used in the case
of Padget's disease.. However, the amt. we celiacs get is 30 mg.
which is much , much less than people with Padget's disease
receive. You can look up Pamidronate on the internet if you like, and
read all of the testimonies given by people who have Padget's
disease, who use Aredia, but it doesn't really apply to us who are
taking it for osteoporosis. She learned in 1991 when she fell and
broke her hip and had to have a replacement, that her bone density
was just 4 numbers from the spontaneous fracture line. Since then she
took every medication offered except Evista, and none of them built
back any bone density. Each one kept her on the level where she
was, so that she didn't reach the spontaneous fracture line, but after
several years each began to become ineffective in keeping her level,
so she would try another. Fosamax was the most recent drug, and
after three years, she had a bad case of GERD, so she doesn't
recommend it. Aredia didn't improve her bone density either, until
she began using it with Evista which she has taken on a daily basis
over the past year. In the past year the bone density in her right hip
has improved to the point that now she has osteopenia there instead
of osteoporosis, so Aredia and Evista together, are working well for
her hip. Her spine has not improved, however, although it is staying
level. I am now wearing a weighted vest to do thirty minutes of
walking on a tread mill four times a week, or when weather permits
she can walk in the community, in the hopes that the weights will help
increase her spinal density
Her infusions are done at Barnes/Jewish hospital in St. Louis, Mo. She
now lives in Columbia, Mo. which is a two hr. drive to Barnes/Jewish
hospital, but she goes there every three months because Medicare
will not pay for these infusions at the hospitals in Columbia. The
medicare bills for her infusions are paid through Mutual of Omaha
insurance co. but depending on the hospital, they are sent to different
offices. From Columbia they go to a center in Arkansas. She doesn't
know where Barnes/Jewish sends them but it isn't Arkansas.
Obviously, some high school graduate, who has the desk job of
reviewing the bills has decided that with all the medications available
she doesn't need Aredia. Fortunately, the person who reviews the
Bills from Barnes/Jewish thinks she does. Her dr. sent a letter to
Mutual of Omaha's center for Barnes/Jewish explaining the need for
Aredia for those of us who didn't improve our density with the other
medications and it was accepted
She is going into a lot of detail here in the event that I, or someone,
happens to be a patient who uses Medicare. If so, you need to be
sure that in the hospital where you'll be infused, Aredia will be paid
for by the government, or if you are using some other insurance, it's
important to know in advance that they will pay for Aredia. Her bill for
each infusion runs $800 and $1000 and she doesn't know why there
is a $200 difference, sometimes. Medicare pays less than half of this
cost. The infusion takes, for her, three hrs. for the bag to empty. It
comes in a bag, that is hooked up to one of those "Christmas tree"
poles and enters through a vein in my wrist. The first time she was
infused, they set the timing for two hrs, but she had a burning
sensation at the point of entrance, so they slowed it down to three hrs
which works fine for her. There is no burning or any other sensation
during the infusion. At the conclusion, she gets up out of the reclining
chair which she has occupied during the event and goes on her way.
She has never felt weak or dizzy or had any adverse reaction. Some
people like to lie down or sit with their shoulders propped up, on a
gurney type bed for the infusion, but she prefers to sit in a recliner and
read. She hopes this information is helpful to me or anyone deciding
what you want to do. She can positively endorse Aredia and it is her
understanding that most people grow back density with Aredia, alone,
without having to combine it with another product. (Yes, I am a
Medicare patient and this has been most helpful information. My Dr.
said that the cost would be $500 and I would get it every three
months, but I would get it in his office; so maybe this if the reason in
the difference of price. Since she had taken Aredia for almost 4 yrs.,
I can't help but wonder if the Evista alone would do the job).
Since aredia bypasses the stomach this would be better as it wouldn't
cause problems that the other drugs do. Drugs that depend on
digestion wouldn't do much good if your gut is so bad you can't
absorb food. Bones will get better if you can by pass that step. You
may also require more vitamins/minerals as well if you are only
absorbing a small percentage of what you are actually eating and
you will need to space them throughout the day, making sure you take
them with or without food (check w/the pharmacist) to get maximum
absorptions.,.lots of little tricks .only 600 mg. of calcium at a time,
iron interferes w/the absorption of some,.. (good information, I only
found out about this last week when I talked with McNeil).
* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *
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