Treatment Medicines

6-MP, Prednisone, Asacol, Remicade... too many of these kinds of drugs to count.

• 6-MP  
• Ampacillion  
• Asacol  
• Azulfidine Entab  
• Bentyl  
• Biaxin
• Budesonide/Entocort  
• cA2
• Carafate
• Cipro   
• Cyclosporine
• Dipentum
• Flagyl   
• Glutimine
• Immuran  
• Interleukin #11
• Lebrax
• Levsin
• Lomotil
• Medrol  
• Megace
• Methotrexate  
• Mesasal
• Mésoderme
• Palaser
• Pentasa  
• Prednisone   
• Prilosec  
• Questran
• Ranitadine  
• Remicade  
• Sulfasalazine
• Tetracycline
• Thalidomide  

6-MP

• Matt the Webmaster: 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: I take 6-MP and it seems to work, so my doctor says. I have no side effects that I have noticed anyways.
• Roxana: 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: 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: 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: 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: 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: 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: 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: 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: 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)
•  Sari: I have been on this medicine three times in my life.  The first was in 1992, when it was still in FDA trials (but available in Canada).  Being so long ago, they didn't have so many of the "trouble shooting" tests, like the 6-MP metabolites test or the toxicity test -- just your standard CBC.  I had been on 6-MP for a few months and was feeling horrible, but all my bloodwork was coming up normal.  Since they couldn't find anything wrong with me, my doctor told me it was all in my head and to see a shrink.  Around that time I was running "ghost fevers"-- fevers that would come out of nowhere, spike to 104 or so, then disappear within an hour of taking Tylenol.  I was sent home from school with one that was particularly bad, but unlike the others, after Tylenol it would drop to 100, then run up to 104 exactly four hours later.  After three days of this my mom decided enough was enough, she was taking me to the doctor (he had said there was no need to yet).  When I got into the shower, black started filling in the bottom of my eyes.  Nothing too unusual (it had been happening more and more), but this time it didn't go away.  I, although I have no recollection of anything past this point, screamed for my mom.  When she found me, my pupils were completely dilated, and I was saying I couldn't see or hear.  My temperature was 106.   I was taken to the nearest hospital until (after they determined that I didn't have meningitis) I was ambulated to my hospital.  I was in CCU for 8 days because my white count was so low that all who came in contact with me had to be completely sterile--any germ could kill me.  I received three pints of blood because of all I had lost due to internal bleeding.  Several months later, my doctors put me back on 6-MP.  Within a few weeks, I began feeling dizzy, and my next blood test confirmed that my white count had dropped significantly from the two weeks prior.  6-MP was discontinued immediately.  After two surgeries and three years of remission, my Crohn's was back with a vengeance.  After other meds didn't work, 6-MP was suggested.  I've now been on it for 11 months, happily with no side effects.  My dose has been steadily but slowly increased from 50 mg to 100.
• Laura:  6mp is horrible! I had a rare allergic reaction to the drug that lasted for weeks! I was covered in huge, itchy, red rashes and had huge joints!
• Steve: I'm still wondering what this wonder drug is supposed to do. After 18 months, I still haven't seen any true benefit from it. I'm more prone to sickness, and my immune system is weaker because of it -- but my disease isn't any better. But they say that the chances of increased flare-ups result from getting off the medicine -- so I guess I'm stuck on it.
• Proserpina: I was on this for eight months. during the last 4 of those months, I vomited multiple times a day, just about every day. I lost weight, I couldn't go to work, I was pretty much an invalid. I showed up at the emergency room, finally, looking for fluids and they ran some blood work. the tests showed that I had just about no white white cells left. As soon as the 6mp was stopped, so did most of the vomiting. 6mp was slowly poisoning me. It can be helpful, but definitely get regular bloodwork done!!!!
• Ren: I've been taking 6-MP for 4 months now.  I really like this med!  It tastes nothing, it's easy to swallow and you don't have to take 10 of them.  I'm actually on 75mg and my doc don't wanna put me on 100mg because of my WBC, so it's only one and a half pill to take.  Personally, I don't care about all the bloodwork we have to have...  The only bad thing I could say is that it takes to long to show its good effects on the body; I mean, it began to work after 3 months for me.
• Heather: 6MP gave me horrendous headaches and did nothing except show my doctor that on the 6MP blood test they send to California I had the highest liver levels. So they took me off of that!

Ampacillion

• Allison: I was diagnosed about three years ago and have been on this antibiotic since then. I have had minimal occurrences, and experience no side effects. This is considered "experimental", and my doctor has me speaking with others about my progress often.  Antibiotics do lessen the effectiveness of birth control pills, and I may someday build up a tolerance. For now, however, I am thrilled with my medicine and its affects!!

Asacol

• Matt the Webmaster: I took this for 1½ 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.
• Brooke: Personally I think Asacol has no purpose..... but then again... I am not a doctor. =)
• 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: 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: I take 9 Asacol a day, and it really doesn't help me that much. I still flare, and still get head-aches.
• Amanda: 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: 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!
• Fawn: I'm on Asacol right now, two 400mg. pills 3 times a day. And so far nothing really bad has come of it. I have improved for the most part. But I'm starting to get stomach cramps, so I have to talk to my doc about that. I think Asacol is a pretty good drug.
• Sandra: I'm surprised to read that out of the majority, Asacol hasn't really helped many people. Then again, all of our bodies are different. I take Asacol three times a day (two pills each time) and I have found that it works wonderfully. I could not have asked for anything better. I occasionally get a sharp pain here and there but it's better than when I would have that sharp pain, intensified 100 times, days in a row.
• Laura: I was put on 6 Asacol a day and it didn't even touch the pain. This drug doesn't work at all for me.
• Jessica: I went on this because azsuflasalazine gave me headaches when I was on 6 a day.  it worked but gave me a lovely rash!  First day of Hanukkah too!!!
• Misse: Asacol is god, seriously I feel 100 times better now that I am on it, I still get sick more than I'd like to be but the pain is def. less than before, I'm on 6 a day with the 2, 3 times thing going on.
• Sheryl: This med worked for a few months, but then I had a major flare up and had to switch medications.  The main draw back while I was on it was weight gain.  
• Proserpina: This drug doesn't do anything for me. I think my gastro. is just trying to humor me and make me think he's actually doing something for me.
• Keric: The second medication that I went to was Asacol. I take two pills three times a day and I only get pains once every like two weeks. Besides that, there are no side effects and I am still on it, and love it.
• Serra: I've been on Asacol for a year now and I couldn't ask for a better drug!!  I don't' really know why it doesn't work for every one? That I really don't get. It takes away all my pain, sure every now and then I don't feel to well, but I really haven't found out all the foods i can and can't eat. 'Cause like for most of the people here the can't eat or drink any thing w/ milk in it, but it doesn't bother me one bit. But any who Asacol is a great drug and I don't think there is anything better!!
• Janel: 400mg - 4, 3x daily - Like most people who've posted I really don't know if this stuff does anything, but it doesn't seem to have any side-effects so I figure I should keep taking it.  I was on Dipentium before, and I don't see any difference.
• Megan: I thought it was the best stuff. I'm on 8 pills a day. But if I forgot to take it every once in awhile.... no good. I'm in the middle of a flare up and it's not helping at all.
  

Azulfidine Entab

• 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.
• Sheryl: This medication has been great.  It has allowed me to function normally.  I was allergic to it-but my doctor started me out at low doses and gradually increased the dose.  I just found out that my platelet count is low and will be retested in two weeks.  I am hoping this isn't from this medication. I have been on this medication for over a year.  
  

Bentyl

• Jamie: This really helps the spasms. It is kind of like Leberax only a little stronger.
• Laura: Like asacol, bentyl did absolutely nothing for me.

Biaxin

• Jillian: I used this medication because 6-MP didn't work.

Budesonide/Entocort

• Guavos: 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: 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 Ileum, 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: 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?
• 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 usually because I was stupid and ate something I shouldn't have but generally it has been good. You only have to take three capsules (9mg) per day. I also take 6 Pentasa a day as well. Anyway if any can get it try it and come off Prednisone with your doctors help of course.
• Sherry: 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: 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 immune system just like Prednisone did. So the point really is that I don't think this pill really works.
• Wojtek: I personally don't think its really working, or its cause more bad side effects then good. I wouldn't mind it, but the acne is really getting to me. I tried everything, different lotions and creams and soaps, and I still have acne. I want to have a clear face at least. I'm skinny so I don't have much confidence in myself, and the acne is just making it worse.
• Jennifer: : I have been on Flagyl, Salofalk, Asacol and most recently Entocort (budesonide) Let me just say that I LOVE IT. There have been no side effects and I have been in COMPLETE remission for  about a year and a 1/2. I have been able to eat anything and everything. About one month ago I came off it and was drug free for two weeks when I started to get symptoms of a minor flare up. I am now back on it, but it is too soon to tell what effects it is now having.
  

cA2

• Trevor: This seems to have gotten a lot of news coverage recently.  I'm unsure if I'd want to take a new genetically-engineered Crohn's drug so soon after the first conclusive studies, though...

Carafate

• Steph: This med helps with nausea and heartburn but the pills are very difficult to swallow and the liquid is nasty and chalky.

Cipro

• Stephen: 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: 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.
• Emily: This stuff can be rough on the stomach.  I took it along with Flagyl for two weeks but I was vomiting so much that I ended up losing more weight from that than from the flare up.  even when my doc put me on Zantac as well, I still got sick.  if you can stomach it though, it seems to work well. 
• Dorothy: I've taken Cipro before and i was recently prescribed Tequin which is in the same family.  Unfortunately, I'm allergic to both.  They give me arthritis in almost all the joints in my body.  It takes about 3 or 4 days to really hit me, but when it does I can barely walk.  My doctors have tried to convince me that it was something else or somehow related to the Crohn's, but when I stop taking the antibiotics all the arthritis goes away.  My sister has had the same reaction to Cipro so I know I'm not the only one.
  

Cyclosporine

• Chicko: 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 noticed 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.
• Matthew: This was...weird...it tastes like fish, lol.  it gave me MAD facial hair.. of course now I have like...real facial hair, so it doubles out....combined with Prednisone, though, this could be dangerous, weight gain doubles, salt retention is big w/this one.  I had to watch my blood pressure.  I was definitely more relaxed off of this one.  I don't want to take it the next time, either, there were WAY too many pills to take, and they were a pain to unwrap in their foil/plastic things....

Dipentum

• Daniel: This is the same thing as Asacol, except Asacol opens up earlier 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: "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: 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: It didn't do anything and the metallic aftertaste is really gross.
• Trevor: 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 much 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 diarrhea 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 diarrhea 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* drowsiness, 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: Flagyl makes my hands and feet numb sometimes, but it doesn't really bother me though.
• Stephen: 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 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: Let me just scream for a while: AAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH! Flagyl is the worst drug ever created. Nasty, game me rashes, 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 allergic 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: 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 abscesses (along with daily sitz baths). Hope this helps!
• Melissa: 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: 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.
• Fawn: I was on Flagyl for 1 month. It wasn't all that bad, other than fevers, throwing up a couple times, the nasty taste, and yeast infections. The side effects weren't anything worse than already experienced. It did help me feel better while on it, but you can't take it for long periods of time because its an antibiotic.
• Susan: I have no idea what you all are talking about!!! It has no taste!!!! All you have to do to swallow it fast. I mean, you can't just let it sit there in your mouth. I take Orange juice with it and I never taste it, so maybe that's it.
• Matt: I absolutely HATE this drug.  First off, why the HELL can't they coat it?  I came up with this horrible way to bend my head back and actually place the pill at the back of my throat and *still* I wanted to gag from it.  The first time I tried it, I did it like a normal pill and almost threw up as it completely dissolved in my mouth.  If you are taking it, for God's sake, don't take it like a normal pill!!  Secondly, it made me lose my appetite like something wicked.  I was only taking in 500cal/day.  And I felt full.  This is for a 145lbs, 5'10" guy!  So my advise: STAY AWAY FROM THIS DRUG OR YOU WILL LEARN TO **HATE** IT!  =)
• Laura: I love Flagyl! When I start getting rumbling (noisy sounds because of the bacteria that grows in my intestines) I just take Flagyl and within weeks I don't sound as if I'm a cow anymore.
• Steve: This drug does have a bad taste, indeed. It seems to give me some benefit though. I've grown used to the side effects which can include some nausea and loss of appetite. But it has offered me enough benefit to warrant staying on it. I wish they had a better way for taking it, I really dread swallowing that pill. And, don't forget to eat with it.
• Wojtek: I use to take it. It seemed to work wonders, but I was taking it along with Budesonide. I don't understand what everyone is talking about the metallic taste in your mouth, and personally for me, it never dissolved that fast in my mouth. I actually ended up having a better appetite with it, cause I actually didn't have many pains when taking it. But my GI took me off it, she tried to reduce the amount of pills I'm taking. And seeing how she was100% sure that it was the Budesonide working its wonders, she took me off Flagyl. I actually prefer the antibiotics over Budesonide.
• Nathalie: Flagyl is alright for me except I did have some nightmares and insomnia because of it. I don't know nothing about the metallic taste in the mouth and mine doesn't dissolve.
• Keric: When I was first diagnosed with Crohn's disease I was on Flagyl. I worked for a little while but then the pain came back so I went to a different medication. I never vomited or had numb feet or hands and I don't like the taste either.
• Ben: This is another drug I'm currently on instead of a steroid. I agree with what everyone said about the horrible taste it leaves in your mouth; however if you get the small blue ones, they alleviate this taste, I don't know why but this is the truth. Other than the whole taste thing I have noticed no side-effects.
• Poisson:  I started on Immuran a bit over a year ago for connective tissue disease.  It helped me get off the Prednisone as I was at one time on 100mg a day.  I was started slow then taken to 200mg a day over months.  I am on 50mg now.  I have had no side effects except occasional bacteria infection that goes away with antibiotics.  I read some other references to bad things with Immuran.  I just wanted you to know it has been 14 months and no major side effects.
• Ren: I really hate Flagyl!  The pills are big and this med tastes awful!!! It didn't work for me and I won't take this med anymore :-P
• Manon: Flagyl is the worst for me!!! I was on it for a week, and all I was doing was puking it up, it made me feel sick, just sick! I felt worst on Flagyl then of of it. I recommend this to NO ONE and I wish it would be totally incinerated!

Glutimine

• Sean: Glutimine is an amino acid and ,if I remember correctly, was prescribed 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 effectively.

Immuran

• Michael: I loved Immuran, 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 immune 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: It is used by heart transplant patients to suppress 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: This helps get off of the Prednisone without flaring, for those of us who love the Prednisone so much we can't come off of it (HA HA HA!).
• Chad: 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.
• Matt:  I am afraid of this drug.  It doesn't seem to be doing much for me.  I'm taking it in conjunction with Remicade, so the short, two month remission I had I can't attribute to one or another.  It seems to be alright, except for the many complications and long-term scary things.  I do not like being on this medication due to this, and am going to ask my doctor about it in my next appointment.
• Matthew: I really can't say too much bad about this drug....I've just taken it everyday for like...10 months now...it doesn't taste all that bad, like Flagyl does...it doesn't seem to be doing anything really really drastic now, though, since I DID flare up when it was supposed to keep me in remission.  But, other than that, it hasn't been all that much of a danger at all..   I'd say it's harmless, actually.
• Janel: I started at 50mgs because my Doc thought it would help me get off Prednisone.  My hair started falling out so bad it was horrible.  I finally refused to take it anymore.
• Ben: I find this to be moderately effective. during the one year I've been on it I have ranged from 50mg-100mg. I am currently on 50mg and I have noticed no I'll side-effects. I protested them putting me on A steroid, so this was one the solutions. I cant say it is really helping be, but at the same time its not hurting me, the fact that my Crohn's has been relatively subdued leads me to believe its working on some level.
• Elizabeth: It doesn't bother me.
• Chris: Immuran basically put me in the hospital with pacreatitice.  I was in so much pain i was wailing and punching the wall.  I can manage pain with Crohn's any day but this pain felt like someone was tearing my gut out, no that would be like a flare up, it was more like getting stabbed if I could imagine it.  So we called an ambulance and I spent 6 days in the hospital on liquid diet.  Be careful that 6 percent that have reactions to drugs can be you!!!
  
  

Interleukin #11

• 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: I am on Lebrax which relaxes me from the steroids, and also stops the cramping of my IBS.

Levsin

• Steph: 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: 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. 

Medrol

• Daniel: 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.
• Ren: I took Medrol in March 2001 (until July 2001) and I had all the side effects I usually have with the prednisone.  Moonface, weight gain, acne, mood swings etc...  Sure it helped but I swear I won't come back on it, same for the pred hehe!  But hey, if I REALLY have to take steroids again, I think I'm gonna ask for Medrol because I have the impression that the side effects weren't as big as with the pred...
  

Megace

• Mike 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 until I reached 4 then stopped.

Methotrexate

• Sue: 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 Prednisone. 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: 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!!!!
• 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.
• Janel: 25mgs weekly shot.  So far I haven't noticed a difference since I've been taking this, but both my Doc. and a specialist in SF said that this was a good med for me to take since the Prednisone, Remicade, and Asocal aren't taking care of everything.  Giving yourself shots isn't so bad once you get used to it.  It's actually easier then trying to coordinate all the other pills I have to take.
  

Mesasal

• Ricki: Mesasal is an inflammatory drug and works OK, but I still get bouts of pain.

Mésoderme

• Benjamin: I feel excellent, feel good and no more "Cortisone".

Palaser

• 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: It is basically sugar in a caplet.
• Jeff: 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:  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: 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: 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: 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: 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: 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.
• Sari: As I mentioned my Crohn's began flaring up again last year. Flagyl wasn't doing too much for me, so Pentasa was prescribed at half the normal dosage (I was taking 2 pills 4 times a day).  I took two doses, felt tired and took a nap.  I woke up lightheaded and dizzy, and very nauseous.  I have an ileostomy, and the pouch was filling up with total liquid every 20 minutes.  I couldn't keep any liquids down and ran a fever of 102.  I was admitted to the hospital, where Pentasa was stopped, but my reaction was determined to be due to a virus (although I very vocally objected).  Four weeks later, I was put back on Pentasa and had an even worse reaction-- I vomited uncontrollably, still had the outpouring of liquid from the ostomy, ran a higher fever, and passed out.  When the paramedics cam, my blood pressure was so low that my systolic (top number) was 60, and they couldn't get a diastolic.  This time, when I was ambulated to my hospital, my doctors believed me (and I put in a few well earned "I told you so"'s).
• Matt:  It seemed to do the trick for me.  Besides having to take 16pills/day, it was okay.  It's expensive, though (though not as much as Remicade!).  I just went off of it as an experiment by my doctor, and my descending colon hurts like a bitch, so I do have some faith in this medicine.
• Laura:  Pentasa seems to work pretty well. I'm on 15 a day and it seems to keep me in remission.
• Sandra: Just starting taking Pentasa and haven't noticed any change really. Does this stuff even REALLY work? It gets tiring having to swallow so many of those pills, they're sorta big. Luckily I haven't had any side effects (yet) but the pain is still here.
• Wojtek: Was taking it for so long, never seemed to do much to me, or that I noticed. But at least I didn't see any side effects. But I hated swallowing the huge tablets, I would gag so many times until I learned how to finally swallow it.
• Matt the Webmaster: This caused an allergic reaction which actually made my symptoms and pain much worse.  It was as if my stomach was swelling up like a balloon when I took this medicine (which I only did for 4 days before having to stop).
• Prosperina: This is another of the drugs that did nothing for me, and sixteen pills is way too many.
• Elizabeth: 20 pills a day is a bit much, but oh well.
• Ren: I took this med from Nov.1996 to March 2001.  I began with 250 TID and finished with 4mg a day (2 pills 500mg QID)!  My Crohn's was still progressing with Pentasa but it reduced the big *D* and the cramps (they weren't sooo bad), that's why I took this drug for a long time.  I hated the pills because they were VERY big and they were very difficult to swallow. It tasted nothing though...  I didn't have the ones in capsule and I would have liked it a lot more I think!
• Matt: It was at first, the size of these horse pills which scared me. Now that I've been on it for 4 months, i can just swallow them. my friends look at me in a completely different way after watching me just swallow for of them down without any liquid or food.
  
  

Prednisone

• Matt the Webmaster: 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: 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: 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: I hate the Prednisone. It turned me into another person when I was on high doses of it.
• Stephen: 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: After being on high dose Prednisone this summer I found out that I was allergic 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 baby brother you could call it, "Methlypred" My doctor said I was one of his few patients that had been allergic to Prednisone.
• Katie: 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 embarrassed 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: AAHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!! Prednisone is the worst drug EVER!!!!!!!!!!!!!!!!!!!!!!!!!!! I have HUGE cheeks (plus an extra chin!!!!!) Nasty acne and very bad mood swings!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 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: 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; THIS DRUG SUCKS!!! It is THE worst drug ever invented. My face looks like a blowfish, my appetite 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: 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 a lot  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 reversible.
• DJ: This is a MIRACLE drug for me. I was sick for weeks, but within hours of my first dosage 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: 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 stretched out that I am going to have to have reconstructive surgery! Not to mention all the massive stretch marks. My doctors have never seen anything like this and even sent me to an endocrinologist 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 have a mitral valve replacement surgery.
• Annie; I was just diagnosed with Crohn's 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 fiancé is getting a little annoyed with that). I am 20 years old and have never felt so crappy! Although I must say, the Prednisone 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!
• 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 Prednisone 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!
• 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:  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:  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: Prednisone! Yuk! Mood swings, puffy face, insomnia. It can't be good. Anyway in New Zealand Prednisone is pink not blue and it tastes revolting.
• Emily: 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 Vitamin 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.
• TW: I started taking Prednisone 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 appetite is through the roof, and now I'm on a specific Carbohydrate Diet. 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 necessary, take it and think as positive as possible and let nothing, absolutely nothing get you down :)
• Brittany: When I was recently diagnosed with Crohn's disease in May/June 2000 I was first put on Prednisone. Everything was going great at first and I even went on a cruise. I thought it was great until a few days into the cruise. I was in Bermuda and in the sun all day. The Prednisone made my forehead like bulge out. The next day I woke up and my face was a mess covered in pimples. It made me very upset I would cry everyday because of the way it made me look, I felt like I became depressed. I wouldn't want to go anywhere or let anyone see me. I gained over 20 pounds and my face got fat. My face slowly went down and I lost the weight. My face has cleared up and I am much happier. I have been off of it for about 3 months now. Even though I don't look like the Brittany I use to be I'm still happy. I now take Pentasa which is like nothing but I guess it must help me.
• Fawn: I was on this drug for 4 months, I have mixed feelings about it. The side effects are horrible, a fat face and more weight around the waist because of salt retention, hair loss, and hair gain on my back. But it is also really helpful, I didn't experience any symptoms of the CD while on it, I felt great actually! See, instead of having horrible mood swings, I was like the happiest person alive (it gives you that euphoria effect) and a neat freak too. But then coming off it was horrible, bad mood swings, I was very depressed. It turns you into a different person, literally. There's good and bad about this drug.
• DiscoGirl: The side effects are the worst. That's all I'm saying. People notice some of the side effects (Chipmunk cheeks).
• Laura: I hate Prednisone and everything it does to me!! I'm almost 14, and I'm 4'11" and weigh 83 pounds!! It makes me eat tons, gives me fat cheeks, makes me look flushed, gives me nightmares, and makes me really out of it!! I hate it!!
• John: The 2 months that I've been on Prednisone have been the worst 2 months of my life.  The treatment seems to be worse than the disease.  Every inconvenience you could possibly think of, comes with the Prednisone.  I also think that there's something about the pill that wants you to be ugly. Acne, the puffy face, heck, the puffy EVERYTHING!  I look like a line backer and I HATE it!  The only nice thing I have to say about it is that the side effects are not permanent.  I'm down to 10 mgs and I'm starting to notice the puffiness going away, but not fast enough!  I don't recognize myself and neither does anyone that hasn't watched the metamorphosis (anyone I haven't seen in over 2 months).  My family and friends must think I'm crazy because of the side effects, and sometimes I think that they might be right.  It turns you into a different person.  The sobering part: you really learn who your real friends are because the side effects are hard for other people to handle.  get off this drug from hell as soon as you can!  It's necessary though.  It HAS made me better though, almost a miracle, but it still SUCKS!
• Bryan: I started taking 30 mg of Prednisone every day about six months back or so and it seemed to help. It was the first drug I went on, along with Zantac to control the Prednisone and its ulcers it brings. Every now and then, I would have a bad stomach ache, and it really sucked! Then, my doctor switched me to Prilosec and I have been feeling so much better! I think the Zantac wasn't agreeing with my stomach too well. Four months or so ago, I was put on 6-mp and I think it might be starting to kick in now. My dosage of Prednisone has been lowered over the past few months and now I am down to 5 mg every-other day. I will probably get off of Prednisone really soon when I know for sure that the 6-mp has kicked in. For side effects, I have gotten puffy cheeks and some mood swings here and there. Also, I have these weird "out of body" feelings every now and then. However, I think Prednisone is a great drug. I am 13 years old, turning 14 soon, and weigh only 74 pounds or so. Before going on any drugs, I was 13 years also and weighed about 62 pounds. You could say that my cheeks puffed up, but I was very skinny at the time and it helped fill out my face. You may hate the side effects of Prednisone, and
  trust me, I do! But it is an awesome drug and helped me soooo much! I rarely have stomach pains and I feel so much better than I did when I wasn't on any
  medication.
• Matthew: I was on this, along with a combo of Cyclosporine and Flagyl, for 6 months last year (march-mid august 2000).  I flared up again early November and I got put back on, 40 mg a day...the first time I started on 80!  60 was the way for awhile....with this experience set aside.. I can continue... I recently realized how much of a different person I am with this....not a lot of my friends quite understand....the mood swings are probably the most terrible part...I was depressed for a while.. I know suicidal tendencies aren't uncommon, either...Prednisone made my face (along w/ Cyclosporine) very very very big.  I gained 50 pounds out of the hospital.  I was 235 for the longest time.. now I'm on it again and I've been plateauing around 215-220, after normally being 205-210.  I hate it.  I hate what it makes me look and act like.  I love the friends I have that understand....
• Jessica: I was taking this when I was first diagnosed. Yuck!!!!!!!!  It tastes horrible.   I used to take it in yogurt but would chew the yogurt  YUCK!!
• Sandra: After hearing all of the horror stories, I was scared to take this drug but alas, I am now on it. Luckily, I'm only on 10mgs a day because my doctor even says it's a horrible med with the worse side effects. It wears away at your bones.....why would anyone in their right mind make this? No side effects for me yet, probably because I'm on such a low dosage. It tastes HORRIBLE but I found that if I fill my mouth up with water and swallow fast (trying not to hit the tongue), it's not as bad. I've been noticing my mood changing and me not being as "happy" as before but hey, whatever helps. Tell you the truth, I see no difference in my pain....I still have them. My body temperature seems to be all out of whack. Kind of hard to sleep in the winter when you have to
  constantly kick the covers off.
• Ilana: This is the worst medication I've EVER had to take! It gave me horrible mood swings, I had a huge appetite, and it made me gain so much weight (which in the doctor's eyes was a good thing), but it really sucks when you don't have one pair of pants that fit you anymore.
• Gary: This medicine is wonderful. It alleviates my pain and makes me much more productive. According to my pharmacist, it tends to make people feel good mentally, so all this bad feedback surprises me somewhat. Yes, sure, the moonface has me concerned, but it does, in fact, go away when it's discontinued. The mood doesn't swing.. if you watch yourself, you may observe that your tolerance for stress is significantly higher now. I feel like I'm doing the work of two people, yet not sped up or disoriented.
• Shannon: This is the worst drug ever!  I hated the nasty side effects; weight gain, moonface, and acne galore come to mind!  It was miserable, especially for a teen experiencing her first year of high school with a moonface and acne.  A word of encouragement though:  there is life after Prednisone.  I didn't think so at first, but you'll get through it!
• Cynthia: I was deeply, deeply touched by the comments of fellow Prednisone users.  Fortunately I have not had to take the drug for years as my asthma and eczema are controlled by inhaled steroids and a topical immunosuppresent.  I feel so much for those who cannot escape its wrath and who are left with no other options.  I want to impress upon its users that this is a VERY potent and dangerous drug that-although it definitely works on inflammation-is NEVER to be taken lightly.  Literally.  I was also concerned to read some of the entries that said things like, "I try not to be concerned as the side effects are reversible."  This is often VERY far from the truth.  Long-term steroid use comes with a litany of life-altering side effects that are often very irreversible.  Growing up with inflammatory diseases I know that steroids are often given out very freely, in a higher dose than possibly required, and often to protect the doctor.  I am NOT saying they are not often necessary.  They are.  But EDUCATE YOURSELF.  Also, you must be aware of the risk of bone-thinning, damage to the eyes, stunting of growth in children, stretch marks, and the fact that your own adrenal glands may shut down after prolonged use (Cushing's Disease).  Often these are NOT reversible and-perhaps even more alarming-often your doctor will never mention any of them.  Like I said, EDUCATE YOURSELF.  My heart and soul goes out to those who were dealt a genetic hand that warrants to use or necessity of this medication.  Try to surround yourself with supportive, educated people.  The last thing you need is peoples' ignorance bringing you down!  Hang in there!
• Prosperina: This drug is pure evil. I was on 60 mgs./day for 5 months. I gained weight, my legs were so weak I couldn't get out of the car, and I had awful heartburn. Then when I was coming off of it, I had horrendous mood swings, paranoia, and hallucinations. I will suffer anything before I would go back on this drug.
• Matthew: Arrrrgggghhhh!!!!  The cruel irony of it all!!!!!  The effectiveness of the drug is incredible.... no more stomach pains nor other pains in different areas, indigestion is much more mild and less often.... and yet, I now have the fattest face in the world!!!!  every day I look in the mirror and bam!!!!!! That and my head feels crazy at times, and my friends are all starting to notice that I'll be entirely sane, then all the sudden just go off on some weird fling.  The mood swings are relatively mild though, which is better.  I hope to someday rid the world of Prednisone and give it something much better in return.
• Nathalie:  I've been taking Prednisone for 2 weeks now but last year I was on it to. I have to take 8 pills in the morning and I hate it because it dissolves quickly. Anyways, I used to loose my hair so much I had to cut it short. Hope it doesn't start again. Now they're starting to get me off of it and I just can't wait to get rid of the moonface and double chin. I'm very skinny so my big face shows a lot.
• Kalin: After reading all these I realize I'm not alone. Before I was even diagnosed with Crohn's my doctors thought I was anorexic. I was like 4 "8" and like 69 pounds. then they put me on this crap I gained like 70 pounds I was up to 140 I like doubled. I had wicked bad mood swings and I could not stop eating. I just hated myself and did not want to do anything or go anywhere. when they took me off it I went down to like 85 and my mom freaked I had a flare up and here I am 7 months later (which is way longer then I was on it before last time  like 4 months) 128 pound and I will be staring high school this coming September. I am only 4 "10" I will never grow !!!! I hate this crap!!!!!!! I would rather deal with the pain then this!!! Anyone else
  feel the same??????????? please tell me!!!!!
• Alina: I have been on Prednisone since Feb 01'. Although I have experienced horrible side effects such as "moon face", swollen ankles, acne, etc.  It has also helped me a lot. I had an allergic reaction to Asacol ( a drug for the disease) which created huge red bumps on my shins, I got Episcleritis (another side effect of Crohn's) which made my eyes swollen and red, and as a side effect to antibiotics I got extremely sun burned. All of these things can be treated with Prednisone, which I was already taking, so in a way I am glad that I have to take it.   
• Shauna: Prednisone is the worst drug ever! Although it helps, it has HORRIBLE side effects! I was on it 4 years ago on a really high dosage, and my cheeks blew up and I gained a lot of weight! I looked like one big balloon! People made fun of me and everything! I was so upset over my change, my self-esteem was really low. I survived Prednisone, and now my self-esteem is back to normal!  I hope none of you ever half to go on this drug!  
• Ben: Ahhhhhhhhh the infamous steroid, the one we all love to hate, but we need it so bad. For the last year I fought my doctors on this one, I know what it will do to you, the mood swings, weight gain, etc. However I started to have a flair up the other week, I decided to allow them to put me on 20mg a day, as much as I hated this, it seems to be working. Its the most hated Crohn's therapy; however many would agree with the fact that its the most productive.
• Sarah: I have stopped taking Prednisone, but when I was on it it didn't do much to help me and I was on very high doses for about two years.  How I used to take them was I would put them in Double Stuffed Oreo Cookies because I don't like taking pills and I would eat the cookies and it wouldn't be able to taste the Prednisone.
• Janel: Not much to say except that it works, and it's horrible!  I go through the worst depression (and weight gain, puffy cheeks, and mood swings).  I have learned that when I start to flair, to get on at least 40mgs ASAP.  I'm at 25mgs now, and haven't gotten lower then 5mgs during the past year.  I have already started to have a cataract in my right eye because of it, so please, if you are using Prednisone for prolonged periods of time, let your eye doctors know so they can keep an 'eye' on things.
• Ren: OMG!  I swear I won't come back on this med again!  I've taken the evil Prednisone 5 times.  The side effects are terrible!  The first time I've taken it, I was like a big balloon!  As for the side effects, each time, I gained a lot of weight, I had the horrible moonface, I won't talk about the mood swings (that was the worst part I think!), insomnia, the growth of the facial hair, I lost the hair on my head, I got the ugly stretch marks (that won't go away:( ) and it takes awful! I probably forgot some other things...  Anyway, it works very well but it's the worst med ever!
• Megan: I agree with everybody. I got fat. And I have issues about being fat, so I feel even worse. My legs get all thick, and it just sucks.
  
  

Prilosec

• Ashley: This controls the acid in my stomach because I have ulcers in the stomach area.
• Alison: 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: 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.
• Ren: This is a God sent, really!  It worked soooo much for me! The pills are very little and easy to swallow, taste nothing and no side effect... That's perfect!
  

Questran

• Steph: 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: 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.

Ranitadine

• Peter: It's an antacid that works really well to prevent heartburn which I've had a lot of trouble with.
• Ren: Except saying it didn't work for me, I have nothing this say about this med...
  

Remicade

• Gayle: 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: 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: 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: 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.  I had to have a second infusion a year and a half later, and now I'm back to feeling great again.
• Tamara: 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:  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 your health care can't pay for it.
• Matt: This medicine is SUPER expensive ($3,000 a shot, and you have to do three).  It seems to help some people, especially for those of with Crohn's in the anal area, but I just got another fistula on my anus which leads me to believe that it didn't work for me.  The injection process is straightforward and easy.  They even came to my house.  It was funny to have my roommates there with me and a giant IV stand.  But the moral is it is expensive and it didn't work for me.  Also, nobody knows of the long-term effects of this drug, which is scary for me.
• Laura: Remicade is a complete waste of time and money. I had to drive to another city and get put in the PICU for a whole day. It only lasted for 2 weeks and they said it would last 6-8!! I had minor side effects and developed a rash. I'm allergic to Remicade!! The next time I was hospitalized they were forced to give me Remicade as a last resort. But I'm allergic so they had to get permission to intubate me if I stopped breathing!! It didn't help at all the second time. I'll never get Remicade again because it could be fatal for me!!!
• David: David had his first Remicade Infusion on November 15, 2000.  So far so good!  This is the best he has felt in years!  He was finally able to stop the Prednisone and if he continues to do well the doctor will start reducing some of his other medications.  Remicade was $4000.00 for the one dose!  YIKES!  Thank God for health insurance! 
• Steve: I had my third Remicade treatment today -- it lasted about 10 minutes before an allergic reaction sent me calling for nurse. I couldn't breathe and was terribly frightened. It took more than 10 minutes to reduce the reaction, but eventually it wore off. We obviously stopped the Remicade, so I never even go my dosage today. My first two experiences with Remicade offered limited assistance. My disease became slightly more controlled, but nothing significant.
• Erin: I just received the infusion four days ago, and I am Already feeling better (and my Crohn's is Not mild nor moderate--it is hardcore) I had been fairly sick since Nov.; I am 20, was diagnosed when I was 16, and for those four years have had scanty periods of remission. I have yet to experience long-term remission-- I pray that this drug will get it for me!
• Prosperina: I got two infusions of this drug last year. I noticed a difference the next day both times. I definitely felt better, though not entirely good. as it turned out later, I already had a large narrow stretch in my small intestine. I think if I had gotten this drug earlier on it could have done me a lot of good.
• Elizabeth: I've been on Remicade for the last year and a 1/2...........and I'm pretty much in remission  now!!!!!!(at least close enough to relax a bit more!!!!) I've tried to spread out my infusions for longer then 3 months, but I start to flare up a bit, and its hard to get back into the "feeling" good groove, as I do when I'm on the Remicade. So right at the 3 month marker, I'm down at MUSC, getting popped with the $7500.00 fixer upper!!!! My insurance pays all but 1400.00 of it, and even if they didn't........I'd find a way to get my Remicade!!!  
• Janel: I had my first treatment while at the hospital last November.  I do think that this medicine does help.  Unfortunately the only way to get it around here is to go to a hospital short stay for the 2-3hours it takes, which means that I have to miss work.  Can't they do this on the weekends???
• Chris: Remicade, well I thought I had found the cure to my Crohn's, but on the third transfusion my throat began to close up, I got really hot, and could not breathe.  They had to put me on oxygen, I honestly thought I was dying.  Just be careful and the second you feel any kind of tingle or warmth tell the nurse.  This drug does work for some.  And there are many in line with less reactions on the way.
•   Anthony: I have been taking Remicade since my second hospitalization for Crohn's disease, which occurred July of 2000. I have taken the treatment whenever I felt pains coming back. It was a cure as far as I was concerned it was amazing how fast i felt better the next day even. The thing is I went recently for another treatment b/c of a flare up and the treatment didn't work. I asked my doc why and he said that some of his patients don't respond to the drug after being on for 2 years or longer. lucky me and here I thought I would never be on Prednisone again, because of Remicade. It was a miracle drug in the beginning now it is useless for me. But I truly recommend it for anyone it works wonders.
• Heather: Remicade is the best drug I have ever gotten! I have had 16 infusions of Remicade so far! It is really  a god send. Had it not been for Remicade I wouldn't still have my colon! So yeah Remicade!
  
  

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:  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.

Thalidomide

• Vicky: I've been on thalidomide for about 6 months, and I don't think it worked for me.  I have only know of one other person who has tried it, as I think it is still in it's early stages of being used to treat IBD.  We decided to take me off it and see how I continue, and so far I haven't deteriorated!  I think it works by a mechanism similar to that of Remicade.
• Ben: I am one of a very few people that is being treated with this drug for my Crohn's. I have a rare arm disorder called Lymphatic Malformation. This drug is also used to treat that and they are trying to kill two birds with one stone. This is a very drastic drug; however the payoff so far in studies have been good. I'm on this drug because I have to be for my arm, otherwise I don't know if I would strictly for my Crohn's, although I'm still in remission for the most part, so I cant really say its not working. If you are seriously ill, and no other therapy is working for you, its worth a shot to contact someone at Boston's Children's hospital, there doing great things with this drug.
  

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