Crohn's Disease & Ulcerative Colitis Support Group

Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...

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Worried about taking UC medication.

deleted_user
deleted_user
Wanted some feedback. Do most people on here take medication to control their UC? I have a GI appointment tomorrow.


I was prescribed Lialda. It was 2.4 Grams of Lialda each day. To me that seemed like an awfully strong dose of medication. However I read user reviews and Lialda has really helped a lot of people.

I took the first dose and broke out in hives. I felt chest pressure as well. This was about 4 months ago. The doctor told me to discontinue the medication.

My dilemma is reading about all the risks associated with some of these medications. For example your immune system can be compromised. Or you can suffer liver damage. I know these side effects are rare. However they are scary to me.

I might have broken out in hives due to anxiety about taking Lialda. However I had never broken out in hives before. The Hives popped up 10 hours after taking Lialda.

What is weird is I took a Mesalamine Enema and did not have issues.

It seems I cannot win. If I do not take medication I might suffer from complication. However If I do take medication I might suffer from unwanted side effects.
deleted_user
deleted_user
I know this sounds bad, but I wouldn't read the sideaffects! If you read the sideaffects to every drug known to man including tylenol...you would be scared to death! even vitamins have side affects and interaction with prescription meds. It could be anxiety and it could be that it was some inactive ingredient in the med that you were allergic to. Or you could just be allergic. I hope and pray that you can fin a med that will do the trick and want hurt you in the least. The printouts with the side affects on it are great, but they also scare the crap out of people! Good luck!
deleted_user
deleted_user
its possible you had a reaction to something other than the mesalamine in the lialda. There are many ingredients used to allow the drug to b released the way it is. If you decide to give it another try make sure you have some benadryl handy in case you have a reaction. Some of the meds can lower your immune system but so does our uncontrolled disease. Make sure you bring up any and all concerns with your gi. Best wishes
imneiss
imneiss
Side affects are good to know... Not everyone will have these side affects...but if you experience them... report it to your doctor pronto! I know I hate taking drugs if you can make changes without them then why take the risk? I don't like it when doctors aren't open to natural solutions and are quick to hand out pills... Sometimes drugs are needed...
deleted_user
deleted_user
Ask your doctor about Asacol. I've been on it since 2006. My insurance won't cover Lialda, but I was told it's basically the same thing, just less pills. So I take 3 400mg Asacol, 3 times per day. he said it's the same thing. maybe the Asacol won't have the one inactive ingredient in it that is giving you an allergic reaction. As for the side effects, the only side effects i've ever experienced with any med was Predisone. I'm suffering now with crazy mood swings, insomnia, facial hair growth, eww, shakiness, super energetic. With Librax and Bentyl, i get drowsiness. Oh, and with the Asacol, I get a runny nose when I eat. My doctor was testing me monthly for any liver damage, and I usually get a full screen of all organs to make sure that any meds aren't effecting the other organs.
deleted_user
deleted_user
You definitely need to know about the side effects and watch for them. I had several of the so-called "rare" side effects such as steroid-induced diabetes. Since I wasn't aware this was a potential side effect I let it go way too long and when I finally called my GP and was told to come in immediately, my blood sugar was over 660 (normal is 80-110). I also had liver issues with one drug for the diabetes, leukopenia (white blood cell loss) with all of the salazine drugs, and my wife had three miscarriages while I was taking 6mp. These drugs are not things to mess around with.

I hope you find the right combination soon.
rmb
rmb
Right, we gotta know the side effects so that we're aware, but I suspect that some people may start obsessing on side effects which isn't good either, because I think that anxiety can make you feel sick. So it's a balance between awareness and not making yourself nuts over it. I think what LanaReece is saying is don't get too wrapped up in the side effects because that can make people unnecessarily freaked out.

Most drugs regardless if they're related to UC have some type of reported and unreported side effects. You have to weigh the risks of your illness against the risk of the drugs and determine what's right for you.
deleted_user
deleted_user
Thanks for the input from everyone. The comments are very much appreciated. I am doing a lot of research about UC. What can be done to manage a flare up. What to look for if the illness takes a real serious turn for the worse. Finally looking into natural treatments and appropriate diet modifications.
ashley906
ashley906
Hey lady! I have taken pentasa or Lialda at 4.8 grams so twice the dose for years! They are the safest of all the drugs. Even headaches which is the most common only happen in 5% of patients that take them.

It sounds like you are really having some issues (and I mean this in the sweetest way) with acceptance. You have an auto immune disease which means your immune system is attacking itself and there is no cure. I have been in remission and feel great right now but I need the right combination of drugs to keep me healthy. The reason that other drugs effect your immune system is that your immune system is working overtime right now and the idea is so slow it down!

I stay on my pentasa (Mesalamine- like Lialda or Asacol) because it coats my intestines and doesn't allow my immune system to attack it and make it inflamed! You need to take that inflammation down!
deleted_user
deleted_user
i have had uc since 1996, but have not taken the meds until 2008. I have taken lots of prednisone, Lialda, 6mp, Remicade, and Asacol..and something else that was an enema..... i guess i have tried it all! I have not had any side effects except from the prednisone...i developed cataracts. Make sure you do all the recommended testing that goes with the meds on a monthly basis. I am currently on Remicade, 6mp, and lialda. I do take a daily multivitamin. You know your own body better than anyone else, so make sure if something does not feel right, you notify your Dr. right away and try a different plan....i think i am a mini-expert at that! haha! Good luck. hang in there....you are NOT alone!
buster2701
buster2701
missdee72-Thank you. I am taking Asacol and always have a runny nose when I eat and didn't understand why. Now I get it.
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