In Need of Advice!!

[ragazza8645]

I have had crohn's for 6 years now and i have been well controlled with Asacol. A few minor flare ups that would last a week here and there but nothing too bad. I had been very fortunate until this January. I was having constant urgency and had diarrhea 6 times a day. i was getting constant cramping (they then prescribed me bentyl). I couldn't barely leave my house it was so bad. I was taking up to 20 imodium every day just so I could make it through work and lomotil didn't help at all either. They did every test to find the inflammation and after a colonoscopy, endoscopy, bacterial overgrowth breath test, multiple blood tests, and stool tests they couldn't find anything and Finally they did the PillCam and it found ulcerations in my small intestine. They tried putting me on Entocort but that didn't work so they tried Prednisone, which also did not work. I then went to a specialist after 5 months because my GI doctor didn't know what to do for me anymore. So he decided to start weaning me off the steroid and prescribed me cholestyramine and switched me from asacol to Pentasa. The combination was great for me. I had 2 great months and I thought finally everything was figured out and I'd be ok again. But, I finally got to the end of my tapering for prednisone this weekend (after going down 2.5 mg every 2 weeks) and I felt a flare up coming back on right away. The cholestyramine did nothing for my diarrhea. So, my doctor wants me to go back on the prednisone starting at 20mg once a day. And he wants me to go on Imuran. I'm a little nervous about going on Imuran. I have read the side effects and the long term risks. I'm just afraid of going on another medication that won't work for me. Now my body is relying on Prednisone but it's not healing anything and I don't want that to happen with another medication, especially one that seems so severe. I have an appointment with the specialist tomorrow to go over everything. I just wanted to see what other people, in a similar situation, have gone through. They said that if i don't do imuran the other medication would be humira or remicaid, which also makes me nervous.

 

[PattyLynn]

Hi Ragazza,
Welcome to the forum. It sounds like you've had a really tough go of it. I am on both Remicade and Imuran. I've been on Remicade since Nov 2011 and Imuran for about 10 or 11 years. I started the Imuran after one of my surgeries in order to help prevent the Crohn's from flaring so I don't really know if it helps to get active Crohn's under control. What I can tell you is that after 10 years, I have not experienced any of the negative side effects that are possible with this drug. The dose is based on body weight so have been on 125 mg for most of the past 10 years except for a year when I gained tons of weight due to Prednisone and my Imuran was increased to 175 mg. I need to go for blood tests once per month in order to monitor my liver but like I said, I haven't had any negative side effects.
I am still relatively new to the whole Remicade experience. I was also very nervous about going on it and I haven't yet had the success I was hoping for but since starting the infusions, I haven't been in the hospital once, so it must be doing something. The way I look at it, and this is strictly my personal opinion, the potential for these drugs to help me far outweighs the possible risks of the medication.
Let me know what the specialist says.
Hugs,
Trish

 

[Patricia56]

Sorry you are having problems Ragz. Glad to hear you are finally going to see a specialist.

I know the official list of side effects and risks for immune suppressing drugs like Imuran can be very scary. But having uncontrolled Crohn's is much scarier if you think about it. Full obstructions requiring emergency surgery, abscesses, fistulas, constant D or C, disability...

If your doctor feels that Imuran is the best option for you then I think you should really consider following his advice.

My son was on 6-MP (same drug but different formulation) for a couple years, some of that time he was also on Humira. He had no problems with side effects and it helped get him into remission.

The short and long term effects of prednisone can be really bad. Mayo Clinc did a study and compared the risk of death and serious infection among CD patients on Remicade, prednisone and other meds. The patients at the highest risk for serious infection and death were those that were on prednisone.

Hope you get feeling well really, really soon.

 

[ragazza8645]

Thank you for your responses! You both made a very good point. I don't want the inflammation to get worse and there is a much greater risk of that happening then getting one of the side effects from Imuran. Trish, I am so glad it worked for you with no side effects! And Patricia, I'm also glad it worked for your son! I like hearing positive experiences because I've been reading so many negative comments on sites so that's why I started my own discussion hoping to hear something good. Well, I'll let you know what happens today with the specialist!

Thanks again!

 

[Ian_H]

Hey ragazza8645,
I have done the prednisone,asacol, apriso, pentasa, and bunches of other treatmeants. I just started Imuran and once the prednisone tapering is done then im going on Humira. I havnt had anything bad happen with Imuran but its early on for me. Im sure you will be fine. Best of luck