Medications
Welcome to the Medications page! As we all know, part of
having Crohn's Disease is taking medicines. This section is a
place to describe the different medications that we take. Send me your comments on
the medicines that you take and I'll put them here. Updated
entries are at the bottom of each individual section. My hope is
that you can look here to get the information about medicines
that you may end up taking someday! Enjoy!
Medicine List
6-MP
- So far, I haven't had any major problems from 6-MP. It
depresses the immune system, so avoid germs as much as
possible. I take 2 (100mg) per day, and it has done
wonders. The big downside: it takes three months to even
begin working.
- Kami says: I take 6mp and it seems to work so my
doctor says. I have no side effects that I have noticed
anyways.
- Roxana says: My doc told me that 6-MP may damage
the bone marrow and damage the liver. She said that there
are no reported side effects in me though.
- Stephen says: I'm on this drug 75mg a day. I catch
every imaginable illness out there. I have been on it
for 5 months and have noted no change in my condition.
The doctor is reluctant to raise my dosage but still
wants to keep me on it. It is very frustrating to
experience all the side effects and get no relief!
- Katie says: I really don't know if it has helped!
I was unaware that it took 3 months to work. I guess that
gives me another month before it helps. No side effects!!!!!!!(yet)
- Tawny says: I was on this drug for about two weeks.
In that short period of time I had the worst flare-up of
the disease that my body has ever known including severe
bone-marrow problems resulting in blood transfusions and
a new drug called GCSF to fix the anemia caused by this
horrible medication. Steer Clear of 6-MP.
- Bryan says: I have been on this for about 8 months.
and it has just started to work. When it does work it
does an excellent job as far as I'm concerned.
- Erin says: I have been on 6-mp for the past two
months now as a result that I can't get off the Prednisone. So far I haven't had anything major wrong
with me due to 6-mp. I had a small cold but it went away
within a couple of days. I am on 75mg a day and my mom
feels that it is working because now I am anemic, one of
the possible side effects of this drug. However, there
are worse things that can happen with this drug such as
bone marrow problems, liver complications, and pancreas problems. Luckily, I haven't experienced any of these
myself!
- Ross says: I have been taking this drug for a
while now and have had chicken pox 4 times since I've been on it. now I have the shingles and can't get rid off
them. Ouch! other than that this drug has helped me get
off the steroids.
- Keri says: I have tried 6-MP twice and found out I
was allergic to it; I ended up in the hospital two times
for 28 days total with pancreatitis, caused by 6-MP.
- Dayna comments: I have been On 6-mp for almost
five years now!! My doctor did warn me about the side
affects and so far so good! I have not had a relapse in
about four years. I think this is a great drug( At least for me)
Asacol
- I took this for 1˝ years until it failed and I had a
horrid flare-up in October 1996.
It didn't have too many nasty side effects, although I
had to take 3 pills 3 times per day. I used to take it
when I was asleep, and I'd chew them up instead of
swallowing them!! They have a distinctive and nasty
aftertaste that lingers for days.
- From Brooke: Personally I think Asacol has no
purpose..... but then again... I am not a doctor. =)
- From Stephen: I am currently on Asacol (4 pills 3
times a day), I guess it does some good but I haven't
really experienced any radical changes. Maybe it would be
worse without it, I still flare constantly. I haven't
noticed many side effects.
- Katie says: I don't know how it has helped, but I
guess because I take 8 a day it must have some importance.
My doctor seems to support this med. 100%
- Joella comments: I take 9 Asacol a day, and it
really doesn't help me that much. I still flare, and
still get head-aches.
- Amanda says: I took Asacol and after the 3rd or 4th
day I was so sick. I had a fever of 103-104° F and I was
vomiting non-stop. That was the worst week of my life.
Though there were some good points - I got to miss a lot
of school.
- Lisa says: I was diagnosed with a mild case of Crohn's in Jan.
2000 and was put on Asacol, two tablets three times a day. It was actually
working really really well and I wasn't having any problems until a week
and a half ago. I got horrible pains right below my ribs and was
sent to the emergency room because, as it turns out, I developed chemical
pancreatitus (which I have no idea how to spell). A side effect from the Asacol
that's so rare that my doctor knew it could happen, but never had a
patient suffer from it... until me!
Azulfidine Entab
- From McKenzie: It has really helped me. I'm glad that
there is such a thing, it's not that strong and I only
have a mild case of Crohn's so it's great for me.
Benadryl
- Ross says: This medicine is very wonderful when you
are having an attack! It is not just for allergy attacks!
My doctor's came across this just by accident. It has
helped me get off of Prednisone (bye, bye Cushing's!) ask
your doc about this. A low dose is all I needed and soon
it did not even make me drowsy.
Bentyl
- Jamie says: This really helps the spasms. It is
kind of like Leberax only a little stronger
Biaxin
- Jillian says: I used this medication because 6-MP
didn't work.
Budesonide/Entocort
- Guavos says: It has been released in the UK and in
Canada, but is awaiting approval by FDA in US which
should be by February 1998. It is a steroid but it
supposedly comes without the side-effects of other
steroids like Prednisone. Most of it is not absorbed
through the intestinal walls but just acts topically on
the site of inflammation. The little that is absorbed is
"deactivated" through first pass metabolism in
the liver. I have only been on 5-ASA so far, but this
time (my second flare-up) the doctor says it is not
working and that I should try Budesonide which was just
released in January here in Canada. He thinks it is the
new wonder drug for Crohn's, but I'm not so sure.
- Stephen says: I am not currently on this
medication, but my doctor is seriously considering it. I
have heard that it comes in two forms: One is in a pill
form which treats the Illium, the other is in the form of
an ENEMA which treats the colon. My doctor said I would
have to use both forms to treat my case. I don't know,
does getting an enema every night sound fun to you? I
have heard it has far fewer side effects, but there hasn't
been much long term testing.
- Dchisamore says: I don't want to scare anyone, but
I have been taking Budesonide for several months and I
experienced side effects. My doctors assured me there
would be no side effects, but I gained at least 50 pounds,
my face got really really puffy and I couldn't think
straight or sleep for the first few weeks. It is not
supposed to be absorbed into the blood, but apparently,
in my case it was. I don't deny that the drug works
wonders, but I just think everyone should know what they
are getting into. I wish doctors would just tell the
truth, you know?
- From Antoinette: I had to have a resection about
two and a half months ago because Prednisone was not
working for me any more and the side effect were
effecting me too much but I have just been put on a trail
drug in New Zealand called Entocort it is Swedish and it
is used the same way as Prednisone but doesn't have the
side effects as it does not absorb through the liver. As
we all know the side effects from Prednisone are
incredibly difficult to deal with but with this new drug
it has been wonderful as it has given me my life back. I
still has bad days but it usualy because I was stupid and
ate something I shouldn't have but generally it has been
good. You ony have to take three capsules (9mg) per day.
I also take 6 Pentasa a day aswell. Anyway if any can get
it try it and come off preds with your doctors help of
course.
- Sherry says: I was put on entocort for a month and
it did not do a single bit of good. I was taking it with
pentasa as well. I was told, by my doctor that it was an
excellent, revolutionary drug... let's put it this way I
am now on 30mg of prednisone and still taking the pentasa.
- Peter says: My doctor just put me on Entocort a
week ago, it's supposed to be an enema but he told me to
just mix the pill with water and drink it so it would
work on my stomach, it's gad almost no effect on my crohn's
but seems to have weakened my imune system just like
prednisine did. So the point really is that I don't think
this pill really works. The second drug is called
Ranitadine, it's an antacid that works really well to
prevent heartburn which I've had a lot of trouble with.
cA2
Carafate
- Steph says: This med helps with nausea and
heartburn but the pills are very difficult to swallow and
the liquid is nasty and chalky.
Cat's Claw
- Katie says: This is a herbal supplement from a
woody vine that grows in the Peruvian rain forest. It is
suppose to work as an anti inflammatory (which is
prednisone's purpose). I just started this herd in hope
that it works. Another option is fish oil. These are two
sworn by natural meds. for CD. Anything is worth a try!
Cat's claw can be found at Whole Foods.
Cipro
- Stephen says: Well for a start the pill is HUGE!
500 mg twice a day! It acts much like the flagyl but has
less of an aftertaste. I have no apparent side effects.
It is annoying to have to take two different types of
antibiotics(flagyl and cipro) to treat the same problem.
- Katie says:This really seems to help! The only
problem is yeast infections. I have been on Cipro four
about 3 months and I have had four yeast infections. Not
fun! Just another thing to add. My doctor says it is a
because Cipro is an antibiotic and also all the changes
in my meds.
Cyclosporin
- Chicko says: This is an Anti-rejection pill that
most transplant patients take. My doctor put me on this
so my body wouldn't "reject" my large intestine.
I've noiced that most people aren't on this though. The
only side effect that it has on me is increased facial
hair, so I have to pluck my eyebrows everyday. Other than
that, it isn't very bad.
Dipentum
- Daniel says: This is the same thing as Asacol,
except Asacol opens up earlyier in the digestive tract. I
was on Dipentum when they didn't think the small
intestine was involved, but was just recently put on
Asacol because now they think that my small intestine is
involved.
Flagyl
- Ashley says: "The Death Drug", is what I
call it! It is more like an antibiotic than anything, and
the side effects that I experienced were a metallic taste
in my mouth, numbness in my feet/hands, and also when I
came off of it, my ankles would hurt and did for about 2
weeks.
- Alison says:The flagyl "sucks." My doc
has tried to put me on this a few times at different
doses. Like 150mg a couple times, but he takes me off
after a week because it makes me nauseous and feel gross
and taste a nasty taste in my mouth. Recently I had
something called C dificile (?) and he told me I had to
go on this at like 350mg or more, I don't really remember.
He said there was no way of getting around it, so I took
it. It made me soooooooo sick and I ended up calling my
nurse and doc and getting them out of important meetings
(i was hanging over the toilet trying to get a hold of
them). They found something else called vancomyocin (?)
this was a liquid that I syringed into a glass of kool-aid
4 or 3 times a day for a week. It was sooooooooo much
better, and hardly any side effects that i noticed.
Especially NO NAUSEA!!!!!!!!!!! even though it is pretty
expensive, I would recommend it in a second.
- Steph says:It didn't do anything and the metallic
aftertaste is really gross.
- Trevor says: Don't slam Flagyl! My doctor put me
on Flagyl before I was diagnosed in October, 1996 for a
perianal fistula. It almost cleared up completely before
I was diagnosed, when my doctor retired completely and
pretty mcuh left me alone without another doctor to go to....
I was stupid and didn't go looking for another doctor
until a year later, when my diahrea combined with a new
heavily infected fistula that came back with a vengeance
was causing extreme pain with each bowel movement. The
fistula was far worse than the abdominal pain and
diahhrea for that period of time. I'm now back on Flagyl..
Yes I felt like crap for the first week I was taking it
(*extreme* drowsyness, a lot worse than before), but it
went away and now the fistula has actually had a chance
to heal and I'm getting better. It does get better after
the first week.
- Roxana says: Flagyl makes my hands and feet numb
sometimes, but it doesn't really bother me though.
- Stephen adds: Well doesn't everyone LOVE flagyl??!
What can we say about it? Nasty aftertaste no matter how
fast you swallow, and for some reason the pill seems to
break down before it even enters your mouth. Why can't
they put a coating on this pill?? Other than that I have
experienced no other real side effects. It is another
very frustrating situation.
- Jaime says: I'm on flagyl right now, and so far it's
the only thing that has worked for me. As for the
metallic taste everyone's talking about, I don't know
what your talking about! I just stick the pill as far
back in my mouth as possible and swallow quickly. THey
should put a coating on it though. Just to give my
insight.
- Robert says: Let me just scream for a while:
AAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
HHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
HHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!
Flagyl is the worst drug ever created. Nasty, game me
rasthes, hurt my joints, & when I was in the hospital
they didn't know why I wouldn't stop throwing up. It's
because they had me on too much of that stuff. I am
alergic to it, every time I took it I threw up, can't
stand the taste of it, sight, or even the name. Flagyl...................................................................
Yuk, the thought makes me gag!
- "Dntporter says: A few months ago my son, 9,
was diagnosed with Crohn's and spent two long months at
Phoenix Children's Hospital. He could not take Flagyl
without it dissolving in his mouth instantly, and him
gagging. A nurse suggested grinding up the tablets and
putting them in gelatin capsules. We buy the capsules at
our local health-food store. Works like a charm. The
capsules dissolve quickly so the medication is delivered,
and there is NO metallic after-taste. It is a chore to
grind and fill three capsules a day, but makes life much
easier for him. The Flagyl has worked at clearing up the
perianal fistulas and abcesses (along with daily sitz
baths). Hope this helps!
- Melissa says: Yes the pills are disgusting and
dissolve before you have a chance to swallow it. But for
the past year now I have switched to the capsules 375 mg
and they go down no problems, as for the side-effects
there the same but at least you don't have to taste it
for the rest of the day.
- Bryan says: I was on and off this for a couple of
months. at a time. the first time I got off of it was
during a bad flare up, and the second time because I was
on it for to long and it just didn't work any more. It
seemed to work really good at the beginning of each time.
Glutimine
- Sean says: Glutimine is an amino acid and ,if i
remember correctly, was prescibed to me to help with the
digestion of food. It was also supposed to help the
nutrients from the food to get into my system and body
more effectivly.
Immodium AD
- Steph says:Don't leave home without it. :)
- Ross says:One word to the wise. If you are like me
and have to take it in the liquid, be carful because it
has alcohol in it. I found that the prescription pill
loperamide, which just has the medicine in it works soooo
much better and is really cheap. This drug really works
wonders. I would never get out of the house with out it.
Immodium AD Advanced
- Ross says:This does not work at all!! I've tryed
it several times and the only relief I reseaved was from
gas. I ended up taking the regular to stop everything
else.
Immuran
- Michael says:
I loved imuran, until I had a side effect, and what a
side effect it was. I basically STOPPED producing blood
components. My bone marrow shut down. I couldn't leave
the house for a month, except for school, because I had
practically no imune system. It's a great drug, but watch
out for the side effects. I felt fine until one day I
crashed. My doctor said that was normal for a side effect,
your body gets used to feeling bad, and then one day you
just feel lousy.
- Rachel says: It is used by heart transplant
patients to supress their immune system so their body
doesn't reject the heart. It has a lot of side effects,
it screws with your bone marrow, you can't go out into
the sun because it increases your skin's sensitivity to
sunlight and you could get cancer. Also, they want to put
you on Birth control if you are a female because if you
get pregnant there will be deformation. I feel like I am
damned if I do and damned if I don't. I was on prednisone
and am still on it, 20-40 mg a day. I really hate it.
- Ashley says: This helps get off of the prednesone
without flaring, for those of us who love the prednesone
so much we can't come off of it (HA HA HA!).
- Chad says: I took Immuran for about 3 weeks until
it gave me pancreatitis. That is the worst thing I've
ever gone through. It felt like my chest was going to
explode and it put me in the hospital for four days. That
is just one of the side effects.
Interleukin #11
- From Katherine: I am currently on a drug study for
Interleukin #11. They have tested many versions of this
drug, but now they are on 11. This drug has not been
around long, but seems to really work. I also take
pentasa, but have had an incredible recovery from
interluekin-11. it is given in six week intervals with
injections once or twice weekly for up to 4 times a year.
Everybody that has taken it has been in remission for a
while. Injecting yourself is not that bad. And there are
really no side effects.
Lebrax
- Ashley says:I am on Lebrax which relaxes me from
the steroids, and also stops the cramping of my IBS.
Levsin
- Steph says: I've found that this works much, much
better if you get the sublingual (SL) kind. That way, you
put it under your tongue where it dissolves and goes
directly into your bloodstream. It tastes kind of bad and
gives you awful breath, but it does help cramping. It
made me really spacey when I first started taking it (so
be careful about driving while on it or even crossing the
street <BG>) but my body did adjust.
Lomotil
- Melissa says: Lomotil is an anti-diarrhea
medication that works extremely fast. It helps when you
are having excessive bowel movements. It also takes care
of the cramps associated with flare-ups. The great thing
is the side affects are next to none. As long as I have
taken it, which has been two years, I haven't had one
side effect from it. Not even a headache. Thanks for your
response to my e-mail. It think your website is great. It
helps to know that there are people that care!
Medrol
- Daniel says: This is what prednisone turns into in
the body. It is basically the same thing, but it doesn't
have a lot of the side effects that prednisone does. I
have been on high doses (48 mil., which is equal to 60
mil. of prednisone) for the last two weeks, and so far so
good. You don't get the acne, salt retention, I haven't
been moody or hyper, and I hope it continues. If your on
prednisone for extended periods of time, try asking you
doctor about this drug.
Megace
- Mike says: Megace is awesome. it is a medicine
that is meant for women with Breast Cancer. It does have
side effects that includes APPETITE INDUCING! I have
gained a LOT of weight with this drug. I am always hungry.
There are other side effects too: headaches, nausea and
others. Start slowly if your doctor allows you to take it.
try 1 pill for 1 week, then the next week go to 2, then
next week go 3 then go 4 and STOP. 4 is a VERY SMALL dose,
but effective enough that you do NOT need anymore. I
started with 4 and got sick, i was cut back to 1 and was
told to increase every week by 1 pill til i reached 4
then stopped.
Methotrexate
- Sue says: This one belongs to arthritis patients
but research has proven it to work well with CD. It has
been a great help to me to get off of the evil preds. I
am one of those die hards where once your on it, you can't
get off without getting ill again. I have taken the drug
in pills once (this may cause more side effects because
it has farther to go ie: through the gut) and I have and
am currently taking it by deep intramuscular injections -
seems less troubles this way, bi-passing your stomach.
Although when you take multiple drugs it is hard to
decipher what side effect belongs to what drug, this one
seems to tighten your muscles, and it could lead to liver
problems down the line. Unfortunately this results in
drawing blood regularly once a month up to every 2 weeks.
You may want to look into it, it has really improved my
recoveries.
- Erin says: Although I haven't been put on this
drug myself, I know what can happen as a result of it. My
mom is an RN and has a 32 year old woman patient of hers
that sticks out in her mind. She started to take this
drug at the age of 15 for a severe case of psoriasis. In
the past 17 years, this girl has lost her hair, and been
on dialysis due to kidney destruction. If my new
medication doesn't work, the doctor wanted to put me on
this drug, but because my mom has seen the effects, she
won't let me take this drug. Bottom line: DON'T TAKE METHOTREXATE!!!!
- From Anonymous: Methotrexate had helped me a lot. I have
been on it for 5 months. It helped me get out of a major flare. I was fine
for like 2 months straight. Then I started having symptoms. My stomach was
in pain, i was going to the bathroom a lot and I had no energy.. all i
wanted to do was sleep. I had a colonoscopy done and everything was fine.
they docs said i was not in a flare, and the methotrexate was
helping.... but it was only keeping me "At bay" She said I would
probably continue to have symptoms. Now I wont get off of it because I
have had bad luck with all different kinds of meds. I think Ill stay in it
cuz it is helping me in the long run
Mesasal
- Ricki says: Mesasal is an inflammatory drug and
works OK, but I still get bouts of pain.
Mésoderme
- Benjamin says: I feel excellent, feel good and no
more "Cortisone".
Palaser
- From D: This is a strong Iron pill that I have to take three times a day
because with this
disease I became anemic because my body wasn't absorbing any good nutrients! I
almost had a blood transfusion because my hemoglobin dropped to 92!
Pentasa
- Steve says:It is basically sugar in a caplet.
- Jeff says:You know how Steve says it is basically sugar in a capsule? Well the stuff inside even tastes
like sugar. Maybe I will have to get a second taste. hehe
:)
- Thomas says: I think they are right about the
Pentasa being "sugar in a caplet". Ever since I
started taking it, I have had trouble sleeping, and I
have to take it right before bedtime. I wonder if this
has happened to anyone else.
- Roxana says: Pentasa doesn't bother me except for
the fact that I hate taking 1 million pills a day. And
they also taste disgusting if you suck them for too long.
- Robert says: I love it! Whoever made it I kiss
their feet. This drug does everything for me. I like the
taste too. Oh, everyone should really eat it in ice cream.
- Shaina says: It's the first medicine I've tried,
and it seems to go right through me! It really hasn't
helped either. In fact, and this could be just a coincidence, I feel worse now than I did before I started
taking it.
- Linda comments: So far I have had no adverse
reactions and it seems to be making me feel better in
only 1 1/2 weeks! Right Now I am TPN dependent but
hopefully not anymore. This stuff is great.
- Jenn says: Am i the only one who hates this stuff?
My doc put me on it the day that I was diagnosed with
this horrid disease. I was in the hospital twice the same
week! The doctor said that I was having spasms in my
stomach and intestines. It was making me more sick than I
was without it. I've stopped taking it now and I feel a
lot better.
Pepcid
- Steph says: It can now be bought over the counter
and is better than nothing for heartburn and nausea.
Prednisone
- Ah, the necessary evil. What can I say about this drug?
It's a steroid with some of the worst side effects I have
ever had the misfortune of experiencing. Side effects
included mood swings, increased appetite, unpredictable
emotions (especially when coming off of it!), and bad
acne. My advice is to get off of of this as soon as
possible, but not too fast, as that can have even worse
side effects.
- Loraine says: I love this drug. For some reason it's
the only thing that keeps me going. Originally when I
started taking it I had horrible side effects. Now I take
10mg a day, and it works wonders. I know though that it's
not a good drug to take long-term and I'm wondering about
asking my doc if he's got something in mind. EXCEPT
FLAGYL!
- Antoinette says: I agree whole heartedly about the
prednisone as I have been on this for over two years at
various doses and I use around 20mg per day now but it is
still hard on your mind as well as your body.
- Roxana says: I hate the Prednisone. It turned me
into another person when I was on high doses of it.
- Stephen says: Well what can we say about this
awful, horrible, nasty (need I say more?) drug. It has
the WORST side effects and right now it doesn't seem to
be helping all that much. I just was raised to sixty mg.
a day. MAN what a pain in the butt(literally)! It gives
you acne, bad temper, puffs my cheeks and body (hence the
annoying nickname:BABYCHEEKS). Other side effects:
Insomnia, hot flashes, and heartburn.
- Teresa says: After being on high dose prednisone
this summer I found out that I was alergic to it. I
develop a rash that made me look like a huge read spot
hence the new nickname I got "SPOT". I was then
put on Prednisone's baby brother you could call it,
"Methlypred" My doctor said I was one of his
few paitents that had been allergic to Prednisone.
- Katie says: This is the worst drug in the world!!!!!
I have that nice "moonface" and the increased
appetite (which is a nice way to say Weight Gain). I am
so embarrased with my appearance that i have been hiding
out at home. Fun thing for a 17 yr. old. All i have to
say is it makes you a different person and basically it
"sucks."
- Susan says: AAHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Prednisone is
the worst drug EVER!!!!!!!!!!!!!!!!!!!!!!!!!!! I have
HUGE cheecks(plus an extra chin!!!!!) Nasty acne and very
bad moodswings!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I despise
whoever created this drug!!!!!!!!!!!!!!!!!!!!!!!! How
could a little blue pill cause soooo much bad and evil
for only a little good in return.I'd do ANYTHING to get
off this crap!!!! How would you like for everyone else to
stare at your nasty,disgusting fat huge and acne infested
face everyday???? I have to face it everyday!!!!!!!!!!
- Tut C says: I by far feel this drug is horrible! I
took it for a few months and gained 40 pounds. I went
into depression also. I got so annoyed by the drug that I
wont take even when I am supposed to. I am finally back
down to normal weight meanwhile I was supposed to be
taking the medication for the last 6 months. But I would
rather deal with the flare ups and the pain then the
depression and other side effects!
- Erin says: THIS DRUG SUCKS!!! It is THE worst drug
ever invented. My face looks like a blowfish, my appitite
increased (the nice way of saying you are going to get
fat) and the mood swings are the worst! Even though I
haven't been on a real high dosage (35mg) it is still a
pain. The taste is awful too. It is so bad i can't even
explain it. Just try taking this stuff for four months,
get down to 20mg every other day, get a flair up, and go
back up to 40mg EVERY day. Not fun stuff. My advice for
when you are on this is: do what you are supposed to (as
in eating the right foods, etc.) so you can get off of
this drug from Hell!!!
- Yasmine says: I can understand why everyone is
dogging this drug, but it happened to be the only thing
that helped me. Once my doc put me on it, I felt alot
better. I am experiencing the "moon face"
syndrome, the uncontrollable mood swings (ask my
boyfriend!), the increase in appetite (yes, I am FAT !!!),
the ugly cold sores in and around my mouth, my hair is
falling out, and I am also growing facial hair. But I try
not to let it get me down because once off this
medication, all side effects are reversable.
- DJ says:This is a MIRACLE drug for me. I was sick
for weeks, but within hours of my first doseage I started
feeling better. I take 30mg a day now, and I feel great.
I even joined my high school cross country team. 2 weeks
ago I couldn't even walk because of joint pain. Now, I'm
running! I know there are some terrible side effects,
like increased appetite and moonface. I'll admit that I'm
always hungry, but I've found that by exercising I can
keep my weight in control. And by having a positive
attitude, I don't get depressed. Prednisone is the only
thing that worked for me, so I absolutely love it. And
just do you know, it can give you positive mood swings. I've
been so happy lately.
- Ross says:I was on the steroids for almost 3 years
and never had any side effects except a moon face when I
first started on in. All of a sudden overnight I went
from 95 lbs. to 195lbs. no kidding. my poor body is so
streatched out that i am gooing to have to have
reconstructive surgury! Not to mention all the massive
stretch marks. My doctors have never seen anything like
this and even sent me to an endocrenologist in Denver to
make sure it wasn't Cushing's Disease. Has any one else
been through this hell? It sure doesn't help that I have
to keep taking these steroids every once in a while
because of a Crohn's disease flare up, or asthma attack
or arthritis flare up! My heart is so damaged that I
might have to mave a mitral valve replacement surgury.
- From Annie:I was just diagnosed with Crohns a few
weeks ago and have been on Prednisone for about 3 weeks
now. I hate it! I am gaining weight, getting the moon
face I have heard so much about and the mood swings are
awful (I think my fiance is getting a little annoyed with
that). I am 20 years old and have never felt so crappy!
Although I must say, the pred. took all the joint pain
away (it was so bad I could not walk!) I just wish I
could stop eating! I have never had such an appetite!
- From: Shaina AHHHHHHH! I hate this medication! My
face is all blown up, my stomach is all blown up! (In
other words, I'm FAT!) I have pimples all over my face
and my back! My joints are hurting like they've never
hurt before. I can hardly walk sometimes b/c my knees
hurt so much. I am soooooo moody lately. I cry at the
smallest thing, and then the next minute I'm laughing
like crazy! I know my friends are getting tired of it,
but what can I do? I've been on the pred for two months
now, and as the dose gets smaller, the pain returns. I
guess that means I go back on more of it! AHHHHHH!
- From David:Yes, I may have developed many of the
Prednisone side effects (insomnia, moonface, massive
weight gain, constant sweating, mood swings), but I look
at this drug in a positive light... not a negative one.
If it wasn't for Prednisone, I would still be losing
weight (I lost 30 pounds in two months), I'd have NO
energy (I was constantly tired) and worst of all, I'd
still be experiencing almost constant PAIN. I figure any
side effect is worth not having to go through the pain.
So, contrary to most, I love Prednisone and feel great
taking it in the morning!
- Kyle says: Prednisone! I was on that last year,
1997 to early 1998. It has its ups and downs. You should
see my 8th grade picture compared to my 7th. I weighed in
at 72 pounds in 7th grade and 100 in 8th. Now everyone
thinks I have a disease that every year my face blows up
like a balloon. What do they know? Nothing! I am glad to
be off of that drug! Although it did help me out.
- Nicki says: I hate prednisone - I feel so
different. It's really rotten that such an effective
medicine has such bad side effects - someone I knew asked
if I had gotten my wisdom teeth pulled... I just wish I
would stop gaining weight, especially in my face and neck.
- Karen adds: Prednisone! Yuk! Moodswings, puffy
face, insomnia. It can't be good. Anyway in New Zealand
Prednisone is pink not blue and it tastes revolting.
- Emily says: Prednisone is a horrifying medication,
not just because of the weight gain, the puffy cheeks,
and the mood swings. There is something much worse that
not a lot of people know about I don't think. I know I
didn't know about it myself until I had it happen to me.
Prednisone causes the deterioration of bone mass if taken
for a prolonged period of time. I took 40 mg a day for
over 4 years, and wasn't taken off of the medication
until I had 5 compression fractures in my back. It was
awful, and it got very bad because I didn't realize
anything was that wrong because as you all know, we Crohn's
patients have unusually high pain tolerances. So, I was
bed-ridden for months, and put in a huge metal back brace.
But, there is no way to 'heal' a compression fracture. So,
that happened to me when I was 15 and I am now 19 and
still suffer from unbearable back pain (along with the
wonderful stomach pains.) I take calcium, calcitonin
injections, and vit D every single day to try to build up
my bone density. It was horrible, and all of you that
still take prednisone, I would highly advise you to voice
concern about your bones to your doctor. To demand bone
density tests if you have to take it for a very long time.
I am not saying prednisone shouldn't be taken, because it
did help me at first when I took it; but I just want
everyone to be aware of this possible problem. It is a
very big deal, and I don't understand why more doctors
don't let their patients know about this risk when taking
prednisone. I just wanted everyone to be aware of this,
and that if you have even the slightest back pain, go
straight to the doctor and ask for a bone scan or a bone
density test. (A plain old x-ray usually doesn't show
compression fractures.) Thanks for listening, I hope this
prevents a few more fractures.
- Here's something from TW: I started taking Pred
About 3 months ago after a pretty decent flare-up. I will
Admit My face puffed slightly at 60 Mg where I started,
but that just filled in my face and my friends and
everyone didn't even notice. I mean I'm 14, that tiny bit
of acne didn't kill me, again my friends didn't notice,
and even after 3 months and down to 25 Mg, It has been
actually, a great drug to be on. I have had no mood
swings, My appitite is through the roof, and now I'm on a
specific Carbohydrate Diet (If which you would like to
know more about, some call it the cure of all cures, has
even completetely cured many; e-mail me at notlob55@neca.com).
My parents are all on the rage about this diet, and it
seems to work well. MY advice is if your doctor says this
is neccessary, take it and think as positive as possible
and let nothing, absolutely nothing get you down :)
Prilosec
- Ashley says: This controls the acid in my stomach
because I have ulcers in the stomach area.
- Alison says:The prilosec is mainly a strong
version of tums in a capsule form. I was on it for a
while and started it during my tube feedings because the
liquid would come back up. It helps reflux. I just got
off it 3 weeks ago.
- Steph says:The purple pills are very pretty but I
didn't find this med too helpful (many people do) and was
taken off because it gave me headaches.
Questran
- Steph says: I've been on this for about two years
now and it has been very helpful. It is a yellow, chalky
powder that must be mixed with liquid. It tastes really
bad, but it's helped me soooo much.
- Pete says: Steph said Questran was a yellow,
chalky powder that tasted really bad. In my experience,
the generic brand (which is only $4 cheaper and made by
the same company) is strawberry flavored, which makes it
taste it much better. I take it with orange juice, twice
a day before meals, and it most definitely helps.
Remicade
- Gayle says: It is given intravenously in a series
of 3 treatments. My daughter has improved 100% since she
started the treatment. She has been able to eat salads
for the first time in 6 months. After the initial 3
treatments, the doctor says once a year maintenance
treatment, should be enough.
- Nicki comments: It seems good. I just had the
infusion yesterday, and I seem to be feeling a little
better already! Hopefully this will avoid surgery...
- Andrew adds: So far I have had no adverse
reactions and it seems to be making me feel better in
only 1 1/2 weeks! Right now I am TPN dependent, but
hopefully not anymore. This stuff is great.
- Matt the Webmaster says: Remicade is the best
drug that I've ever taken. The infusion lasted 4 hours
and within hours after that I was starting to feel like
my old self again. Over a year later, I'm still feeling
great. In fact it's helped me to reach remission, so
obviously I endorse this drug.
- Tamara says: My boyfriend ended up in the
hospital last December with a major Crohn's flare up and
his doctor decided that Remicade was the best thing for
him. It was -- for the few weeks it took to
administer the three doses. Shortly after the last
infusion his symptoms returned and now he is on more
medication than ever. It is VERY expensive and I
don't recommend it.
- Martina says: I am on Remicade right now.
I take two infusions every four months. This has really worked for me
and I'm finally off the steroids! I feel this is a great drug if you
are steroid dependent. But can be very expense if yourhealth care can't
pay for it.
Sulfasalazine
- Michael: I
took sulfasalazine for a long time and did great. The
only side effect that I had was really, really, REALLY
bad breath. My doc, at the time, did overdose me on it,
so I can't take it anymore. Because of the o.d. I
developed pancreatitus, which went away after I went off
of the med.
Tetracycline
- Mike Ritz says: Here is another medication that
you could add. It is Tetracycline, and it is an anti-biotic
used while on medications that lower your immune system.
Zantac
- Antoinette says: Zantac for stomach ulcers is a
god send I take 2 to 3 150mg per day and I can't live
without it.
- Stephen says: Two pills a day, helps with
heartburn and not much else, unfortunate that I have to
take it as a result of the prednisone.