Starting imuran and remicade

[polarbearfans]

My UC has gone from mild to very severve this year, and the doctor is putting me on imuran and remicade. I would love to hear about anyone's experience. Kind of nervous since my previous doctor made it sound like them meds were the end of the world and would only keep prescribing me various brands of mesalamine that only made me feel awful (itchy, headaches, sensitive eyes, increased bleeding, foggy brain).

The game plan is for 6 months to hopefully heal my colon so we can move on with our baby making. Not sure what he is thinking for after, but will ask at my follow up. The more mild meds obviously didn't work for me and I just could not tolerate them.

Very frustrated. Gave up all my favorites months ago... Gluten, coffee, alcohol (most of the time!). I feel better but it wasn't enough to calm the inflammation. In suppose it probably would have been worse if I didn't.

[bcv513]

I started Imuran about six months ago. I really didn't want to take that next step and move on from the mesalamine, but now I am SO happy that I did! It's two pills a day instead of ten. And it works soooo much better. Like you, I had cut out my favorite foods. Now I eat whatever I want without a second thought. No more pain, no more bloating, no more running to the bathroom. It's amazing. It does take up to three months to kick in, so don't worry if it doesn't work right away. Like you I also had to put baby making on hold until I got into a good remission. I'm hoping to get the green light at my next appointment in January

[polarbearfans]

Thanks! I'm feeling better about taking the new meds. Google is a scary place and I really need to stop looking things up beyond the specific side effects my doctor said to call about. I find only horror stories online, and I was hoping that there were some positives. I am hoping I have a positive experience too, and these meds are finally the ones that will get me healthy enough for us to get back to our family planning, AND feeling good again.

[polarbearfans]

Did anyone find they got sick more often?

[bcv513]

Dec 8, 2013 0:57:41 GMT -5 polarbearfans said:

Did anyone find they got sick more often?

I haven't so far. Did your doc talk to you about getting vaccines? My GI had me get a pneumonia shot, a shingles shot, and one of the hepatitis shots before starting the Imuran.

[polarbearfans]

Yes. I had to get vaccinated against flu, pneumonia, and hep b.

[caramia]

Dec 9, 2013 9:35:14 GMT -5 polarbearfans said:

Yes. I had to get vaccinated against flu, pneumonia, and hep b.

Definitely get the shingles vaccine too - it's a live vaccine, so you can't get it while on Remicade.  I'm on Cimzia for Crohn's & never bothered to get vaccinated... I just had shingles last month & can verify that it sucks!  The injected flu vaccine is OK on biologics, as is the pneumonia vaccine. 

[aimeedyan]

I did Remicade & Imuran for first two years after diagnosis and Remicade was, truly, a miracle drug for me! I was better almost immediately. It was amazing and gave me my life back. I never had any side effects (until the end when I reacted to it) and did not get anymore sick than a normal person.

I moved to Humira and now Cimzia and I've never done regular vaccines. And strangely have never been encouraged to by any of my GIs. Never a bad idea, though!

[polarbearfans]

Dec 10, 2013 19:59:35 GMT -5 caramia said:

Dec 9, 2013 9:35:14 GMT -5 polarbearfans said:

Yes. I had to get vaccinated against flu, pneumonia, and hep b.

Definitely get the shingles vaccine too - it's a live vaccine, so you can't get it while on Remicade.  I'm on Cimzia for Crohn's & never bothered to get vaccinated... I just had shingles last month & can verify that it sucks!  The injected flu vaccine is OK on biologics, as is the pneumonia vaccine. 

I have been on 2 rounds of prednisone for the past two months trying to get ready for the latest colonoscopy and was told to avoid live vaccines so shingles is out. Almost done with the prednisone! So happy to be moving on. I've lost 20 pounds the past two months.

Already feeling somewhat better after one dose of imuran (only a couple trips to the bathroom vs the 10-15 I usually have at this point) but I think I may have had a bad reaction to it , muscles cramping up to where i had no use of my leg. But again that could have been dehydration and working a super long shift. My legs were already sore before taking the meds. I didn't do a good job taking care of myself yesterday. Water was upsetting my stomach too much to drink at work. Hydrated today so we will see how things go.

Thank you to everyone for sharing your experiences. This is kind of scary for me and I am trying to stay positive.

[polarbearfans]

Dec 10, 2013 21:51:33 GMT -5 aimeedyan said:

I did Remicade & Imuran for first two years after diagnosis and Remicade was, truly, a miracle drug for me! I was better almost immediately. It was amazing and gave me my life back. I never had any side effects (until the end when I reacted to it) and did not get anymore sick than a normal person.

I moved to Humira and now Cimzia and I've never done regular vaccines. And strangely have never been encouraged to by any of my GIs. Never a bad idea, though!

I actually had some trouble getting the hep b vaccine from my primary care. They only did it after I said my GI would not see me anymore (would refuse treatment without being vaccinated). He was also kind of unsupportive of the flu and pneumonia too, but was willing to give me those.