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Never Come Off the Medications (On Your Own)

Introduction:

I’m a 21 year old college student. I was diagnosed with UC – pancolitis – early this year in January. Almost went into remission when I stopped my meds. Worst decision ever. Will never do that again.

Symptoms:

Currently my symptoms are: urgency, frequency (3-5 times a day)
My Story:
Hey guys and girls,I am 21 years old. I’m a senior in college. I was diagnosed with UC – pancolitis – in January of this year. (It took my doctors over a month to figure it out but that’s another story…)

In any case, my treatment was a combination of Prednisone and Mesalamine. 40mg of P (2 month taper) and 3600 mg of M. I was on them for about exactly two months. Why exactly you might ask? Well, my symptoms got better and by mid-March I was feeling good enough to even go start up running again. And so what did I do? I stopped my medications. Looking back it was probably the worse decision I have ever made. I was coming off the taper on the Prednisone at that time but, despite being told that I was going to be on mesalamine for a *while*, I stopped taking that as well.

And for 2 weeks things were okay. I thought I was scott free. But then it came back. 10-20 times a day, bloody nasty stuff. It was happening all over again.

My doctors were very disappointed to say the least. They definitely gave me a piece of their mind.

I was put back on the Prednisone and Lialda (40 mg and 3600 mg). Now, about 1 month later, things are looking better. I’ve tapered down to 2.5 mg on the Prednisone and my symptoms have lessened considerably. I go 3-4 times a day always in the evening hours. Bowel movements rare well formed, soft stools with very little to no blood. I do still have the urgency problem though. I wonder how long that’ll last.

I wanted to ask everyone two questions I’ve been wondering about:

1. How long does it usually take for complete remission? (on average)

2. What are your experiences with Lialda? I’m currently taking 2400 mg a day – two 1200mg pills, one in the morning, one at night. It *seems* that long term use of this drug is *safe*.

Thanks in advance guys!

Where I’d Like to be in 1 year: 
Complete remission!
Current Colitis Medications:
40 mg prednisone (1 month taper). Currently on 2.5 mg
2400 mg mesalamine.

written by: College Student

submitted in the Colitis Venting Area



medications, Pancolitis

5 Responses to Never Come Off the Medications (On Your Own)

  1. Adam
    Adam April 26, 2012 at 7:45 am #

    Hey College Student,

    It must have been really tough to go through UC symptoms while having disappointed doctors at the same time. I think it goes to show that doctors definitely can care about their patients though, look at it like this, if the doctors that you were working with really didn’t care about you at all, they probably wouldn’t be upset that you stopped taking the medications. Anyways, trying to look on the bright side right!

    As for remission, I was able to go from sick with UC symptoms and bleeding to no bleeding and no medications in the span of just over 2 months. This is when I went from tappering prednisone to starting the SCD diet.

    For everyone with UC it is different, because some people will maintain medications indefinitely, others will be changing medications constantly and everything in between. For that reason, I think you’re gonna find everyone’s answers different.

    I don’t have any Lialda experience to share, but I wish you the very best! And I sure wish I was still in College!!!! -Adam

  2. Lara
    Lara April 26, 2012 at 8:31 am #

    I was put on Lialda when I was first diagnosed, last year. I stayed on it while in the hospital. When I was finally discharged, my mom went to fill my prescriptions for me. With my insurance, it would have cost me roughly $700!!! So I called the doctor & was switched to Apriso (much cheaper!!). I was put back on Lialda a week later when I had to be rushed back to the hospital for major blood loss. Again, I was discharged & went back on Apriso. Lialda never really seemed like it did much for me, but then I was only on it for roughly 2 weeks. If you feel like it isn’t working for you, go talk to your doctor.

    Good luck! And I hope you feel better soon! :)

    • christina April 29, 2012 at 11:38 am #

      hi Lara, I read your comment and I saw you start taking Apriso, Is it working ok to you?? I was diagnosed with UC a month ago and at the hospital they were giving me asacol but I chose to take apriso at home, it seems to be working, but last night I went to the bathroom and (its going to sound nasti) but something white came out, is it sme kind of im flaring??? Can someone helped me with this????

  3. Jeff April 26, 2012 at 7:44 pm #

    Hey my fellow college student!

    I am a student at Indiana University and I am 20 years old. This is my first time commenting or ever writing here at Ihaveuc.com. I also have UC and have just come off of a 40mg prednisone taper successfully. But what has helped me tremendously recently (and is also the reason I feel I successfully came off of the predisone taper) is trying to raise my glutathione levels each day through my diet. I have been reading online about the connection between ulcerative colitis and low glutathione levels. I encourage you to do a google search on glutathione and see what you think!

    I hope this helps you because I know how this disease can be!

    Best of luck my friend!

  4. Lara
    Lara May 1, 2012 at 9:31 am #

    Christina: Apriso seems to be working for me. I’ve been on it for almost a year & the only side-effect I have is a CONSTANT stuffy nose. It’s aggravating, but I’d rather deal with that than any other UC symptoms.

    I’ve never heard of anything white coming out. Did you eat something white? Maybe you didn’t digest it properly….. If you see it again, I’d bring it up to your doctor.

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