Wanting feedback from 6MP users

Hello, I'm new on here and this is my story (short n sweet) =)
I was sick at home with a fever, stomach cramps, runs (flu-like symptoms) for 10 days straight. I was told I probably had a stomach virus and to take Imodium to help with the runs but it never helped. I could feel that something was seriously wrong with me and I had lost 20 lbs. during this time, so I had my husband take me to the ER to get checked out. Fecal tests, blood work, and a CAT scan were performed. That's when I was diagnosed with severe UC. I spent that next week in the hospital getting fluids, potassium, magnesium, etc.. put back into my system. My GI DR. put me on Lialda, flagyl, and cipro. After that I have returned to the hospital twice with mild flare ups. I was then put on Remicade (infusions) with my Liadla, which worked fine for the first 3 infusions. I developed a slight rash on my arms right before my 4th infusion, and right after that my rash went CRAZY!!!!!! I am now having an allergic reaction all over my body and have experienced joint burning and pain. My GI DR. told me that 95% of his patients do well on Remicade and there's that 5% that don't, guess I'm that 5%, lucky me. Now I'm getting a second opinion at a major hospital to see what they can do for me, I was told they might put me on 6MP and I wanted to hear from 6MP users and how they're doing. I know everyone is different and meds work in different ways for different people. Just want some feedback please........ Thanks! (Diagnosed March 2011- 42 yr.old Female w/ family history of colon cancer, cancers, and IBS)

     I was diagnosed with UP (proctitis) in 1998.  My GI doctor placed me on 6MP in 2002 after my second severe flare.  I was taking Asacol and prednisone initially and then switched from Asacol to Colazal as maintenance drug.  I was on prednisone along with the 6MP, it took three months to "kick in".  I then was ok for awhile.  In 2003 our daughter was going through a rough divorce, so I was under a lot of stress and I flared again.  Long story short, the 6MP did not keep me in a long remission.  I tried Remicade and then Humira but neither worked. I had surgery in 2010.

     On a happier note, I have a friend who took 6MP for ten years and enjoyed remission all during that time.  For some reason or other, her GI doctor took her off the drug and she flared within two months time.  She is now doing ok with Rowasa enemas and VSL#3.  Everyone is different.  Best of luck and health to you!

I was put on 6mp first, but I have a crazy system and for some reason I can't metabolize it correctly - I can't get into the therapeutic level. So than I started on Remi. I am still on 6mp too along with Colazal. I am on a low dose of 6mp (50mgs) but my GI wants me to stay on it with the Remi to help prevent building anti-bodies against the Remi.

I had a serum reaction to the Remi after my 3rd infusion so now I pre-medicate a half hour before the infusion with Benedryl and Solumedrol. It has stemmed any reactions. Before the pre-med, I had severe joint and muscle pain and then my hands swelled up into claws.

Red_34 said...
I was put on 6mp first, but I have a crazy system and for some reason I can't metabolize it correctly - I can't get into the therapeutic level. So than I started on Remi. I am still on 6mp too along with Colazal. I am on a low dose of 6mp (50mgs) but my GI wants me to stay on it with the Remi to help prevent building anti-bodies against the Remi.

I had a serum reaction to the Remi after my 3rd infusion so now I pre-medicate a half hour before the infusion with Benedryl and Solumedrol. It has stemmed any reactions. Before the pre-med, I had severe joint and muscle pain and then my hands swelled up into claws.

I took Benedryl before all my infusions and still had this allergic reaction. What happen with your serum reaction?

Christine1946 said...

<font color=#800080> On a happier note, I have a friend who took 6MP for ten years and enjoyed remission all during that time. For some reason or other, her GI doctor took her off the drug and she flared within two months time. She is now doing ok with Rowasa enemas and VSL#3. Everyone is different. Best of luck and health to you!

Which surgery? How is that going?

hummingbirds, it was crazy. i really still have no idea what was helping and what wasn't. my last gastro office's philosophy is try everything at once and hope one works. i am at a new doctor thankfully because he tries one thing at a time to see how it affects me.

     Hummingbird, I had a total colectomy with end ileostomy.  I was not a candidate for j-pouch because I had a lot of other health problems at the time...all thanks to prednisone, uncontrollable high blood pressure.  When I say uncontrollable, I mean I was on three different blood pressure meds and my readings were still 216/110.  It is a miracle I didn't stroke out at any given time.  I also had prednisone induced type 2 diabetes.  My 2 hr pp was 300!  My age was 63 at time of surgery.  My surgeon did not think my system would tolerate going through three surgeries and I believe he was right.  I didn't mind the thought of having a "bag", I was just sooo sick of being sick.  NO regrets.  The "bag" is no big thing.  I have my life back and only take 1  pill a day for my BP which is 120/70 most days, sometimes even lower!  I do not have diabetes either.  Off prednisone since six weeks past surgery (June 28th of 2010).  I am now 66 and living life to the fullest!

I was on Imuran for three weeks and felt sick the entire time. I took zofran around the clock and it only helped slightly. I ended up feeling so sick and poisoned I stopped. My GI is out-of-town so another doctor in the practice just prescribed 6MP. I have given myself a few off to rest before starting it. I'm actually scared! I pretty much crashed and burned on Imuran. It took such a horrible physical and emotional toll on me.