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have a few questions about treatment - on lialda 2 pills a day

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Crohn's Disease
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Posted 3/13/2010 11:10 PM (GMT 0)
First let me comment on how wonderful everyone on this board has been to a newcomer. This is a really great forum.  Now for my questions. My doctor diagnosed me just over 2 weeks ago with 'mild' crohns and prescribed me 2 lialda pills to be taken in the am with a meal.  I have taken them religeously at the same time everyday and at first I saw immediate improvement. But now I am back to having a good day..then bad day. The dr told me more than likely the dosage would be increased so do not be disapointed if that happens. Is it possible that treatment can just stop working? I have noticed by the signatures that many people are on multiple meds. Is it possible to treat crohns with just the one med that I am taking? Should I talk to my doctor about adding other things? I am so afraid to be on steroids I just started dropping weight (it has slowed down now) after trying to lose it for the last 2 years and I am afraid going on steroids would just put me back where I was weight wise. I guess I am so unsure of what I should be asking the doctor and am confused about even where to start. I think this is where this disease really confuses me. I have had symptoms of IBS for 8 years..very mild symptoms..mainly 3-4 BM a day, occasional cramping and maybe 6 flares in the last 8 years that really only lasted overnight. How is it possible I could have had crohns this long with some symptoms and not have had major issues. This is the first long term flare up I have had. I knew something was wrong when I lost weight without even trying( so not me!!)I am just so overwhelmed and don't even know where to start.confused
Posted 3/14/2010 6:59 AM (GMT 0)

 tewcute, yes meds can just stop. Your taking the 1.2 gram pills at 1.2 gm/twicea day, the upper dose would be 4.8 grams a day or 2 pills/twice a day. I'm not a doctor this is just for your information, don't change unless your dr prescribes more. Lialda is in a class of drugs called 5-asa or Mesalamine. There are other brands that are more flexible in dosing ie. asacol or pentasa. But your dr. probably pick this drug for you for good reasons. I know from talking with people here at healing well that lialda has lower side effects than others of this class. 5-asa's are the lowest type of drugs used to control crohn's or U.C. here's a link to a site at John Hopkins hospital that will be helpful and explain things such as the drug pyramid for crohn's U.C.

http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Cat_id=AF793A59-B736-42CB-9E1F-E79D2B9FC358&GDL_Disease_id=291F2209-F8A9-4011-8094-11EC9BF3100E    I'm not sure how old this is as lialda is not mentioned but in the second illustration (below the drug pyramid) lialda effectiveness would be the green line or the last part of the small intestine and the colon. I hope this helps you as much as it first helped me. I'd bookmark it or print it out so it's on hand when you need it I did and use it alot. Best regards Robwink

Posted 3/14/2010 10:22 AM (GMT 0)

I can totalyy empathise with your confusion, so many different symptoms, tests,treatments and medications. It can blow your mind when you get hit with it all at once.

I think if I were you I would not yet ask about going onto further drugs-I may be wrong but it appears that Drs/GI's/consultants are pretty quick to dish out  further/stronger drugs without too much prompting.I am not saying that they are wrong I just think hang on a minute, can't we give 'X' a bit longer to work before you add 'Y' to the cocktail. I guess it is a very fine balance betwen the two!

Posted 3/14/2010 1:34 PM (GMT 0)
Thank you guys for your input! I would really prefer not to go on any other meds if I can help it. The Lialda has not been bothering me with any side effects and I am hoping if they up the dosage it will still be ok. My GI seems fairly conservative in that they wanted to start me at the smallest dose possible to see how I react and then up me if needed. I guess this is because I truly have a mild case. My biggest concern is keeping it mild and holding off progression as long as possible. I would even be happy with another 8 years of the mild symptoms that I had before being diagnosed. It is messed up how this really affects your life. I was watching QVC last night and saw a new workout tape that seemed pretty cool and started crying because most days I don't even feel up to doing it and I used to be one to go to the gym all the time. I feel like my life has been snatched away from me and it sucks. And the sad thing is I do not even have as bad symptoms as others on this board. I seem to be more fatigued on some days and have a constant raw ache right above my belly button (that is where the inflammation is).I know alot of people were diagnosed after a hospital stay or after years of misdiagnosis and being in constant pain and my heart goes out to them. I need to quit being such a baby!!!wink  I think it is just hard when you are used to a certain level of living and then literally in a few months it is gone.
Posted 3/14/2010 1:54 PM (GMT 0)
I think having a diagnosis is knocking you sideways (As it did with me, when son diagnosed) His consultant is pretty good in the respect that he firstly goes down the route of treatment that will be less harmful/side affects as in intially colonoscopy as opposed to barium x-ray, enteral nutrition as opposed to steroids(although he ended up having the x-ray and steroids too :( ) What knocked me was the fact that I thought he was doing great(weight gain. colour to face, more energy and no pain) I thought we had cracked it,only for him to have the pain return, not severe but noticeable. I guess it is just one of those conditions that is a bit like a rollercoaster ride of emotions and symptoms.
Once your meds have stabilised your symptoms your body should be able to absorb some nutrients and energy and you should feel so much better both mentally and physically. You hang in there, your life isn't over!
Posted 3/15/2010 9:52 PM (GMT 0)
well I called the doc today after a really bad weekend. Saturday I was so lethargic I basically could have slept all day. probably from lack of sleep friday night due to pain. The rawness is still in my colon after three weeks so I figured I had better reach out to the doc. I am now going on steroids (yuck) for 6 days only and I was advised to up my Lialda to 4 a day. They are hopeful that the steroid will help knockout the inflammation and the lialda would keep it at bay. I am keeping my fingers crossed becaue other than the rawness in my colon my other symptoms are mild and manageble. I follow up with the doc in a few weeks so hopefully I can report good news to them if this works. I am slo going to try removing gluen from my diet. My sister suggested that today and my family is on board with it. It may not help, but it sure can't hurt!!!

Post Edited (tewcute) : 3/15/2010 3:55:22 PM (GMT-6)

Posted 3/16/2010 11:53 AM (GMT 0)
Keep us posted on how you are doing k....lyn
Posted 3/17/2010 7:49 PM (GMT 0)
I started my steroids yesterday and my increased dosge of lialda. geez that drug is so expensive and thank goodness for insurance. Today rawness in my intestine is completly gone..hello amazing..but..I did have increased diarrhea this morning (took immodium with drs permission and it helped) and I have been cramping off and on all day. I am not sure now if it is the steroid or the increased lialda which before did not seem to give me any side effects. Has anyone taken Prednisone with side effects of cramping and increased diarrhea? Other than that it has worked well. I am still waiting for the roid rage to set in..hehehehhe..luckily I am not taking it that long. My conern is if it is the lialda (one of the side effects could be cramping but it did not seem to affect me before) and the lialda is working I don't want to have to take a different med with more worse side effects. Iam on the 6 day pack of prednizone where you start day 1 with 6 pills, then 5,4 etc..etc....not hard core doses.
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