New here / prednisone observations?

Hi, I've been lurking on these forums for about a year (since I was first diagnosed with UC) and decided to join recently. I'm 34/male/live in the southwest.

I was diagnosed with UC last year (after a lengthy series of mishaps and misdiagnosis - I finally went to a GI and he did a endoscopy and diagnosis was consistent with UC) It was pretty bad last year, and I did go into remission... but around Thanksgiving this year it flared up, and it seems to have gotten worse. Further, I've lost close to 40 lbs *during the holiday season* not complaining about that since I can stand to lose some weight, but it is just shocking how fast it came off.

This time around the scope showed a bad flare but not as bad as the initial. I have been on 60mg of Prednisone and I'm getting close to the mark where the Dr. says I will become resistant (not dependent) to the drug. After almost 30 days at 60mg strength (up from 20 then 40) I have noticed it has not helped (still get bloody or wet stool 8-10 times per day, and urgent D at least twice a day)

I have had bad reactions for Azacol and Lyalda has stopped working. He is considering discussing the possibility of either azathioprene or potentially looking into either Remicade or Humira. I've taken a few blood tests to determine how my body will handle/metabolize other drugs. I did some research and side effects on all three of those options seem pretty crazy but I guess I'm not sure how much stock to put into them. I do however, get a few pretty unfavorable things from the prednisone.

So my question is - have you been in a similar situation? What did you end up doing?

Thanks for your time!

I've been on Remicade for seven years after all other remedies failed me.

garylouisville said...
Have you tried any probiotics, supplements, or diet changes?

Yes, I've generally stuck to a low fiber diet/several smaller meals, keep an intake/output journal and while I have not tried any probiotic supplements I do eat probiotic rich foods (yogurt, kefir, etc) throughout the week; I'm not lactose intolerant. I take a daily multi considering fish oil and possibly iron supplements (body has had a hard time with red meat during this flare) but not sure about that yet.

fruitgirl said...
An advantage to either Remicade or Humira is that if they're going to work, they'll start working much more quickly than the aza. Since you're on high-dose pred, and it's not helping, I think you should take the speed with which the drug might work into consideration.

Thanks - this is very similar to what my GI said. He indicated we could try the aza but it would be a slower process and asked me to look into Remicade/Humira to see if I would be interested in those treatments as well (I'm not real keen on injecting myself, however).

Have you ever tried any rectal meds?

I've been in remission with Remi since April, 2006. Statistically, it will help about 60% of people get into remission; the number who maintain the remission long-term is lower, but I'm proof it's possible.

I haven't had any problems at all; I always say infections have a really hard time getting past my ramped-up immune system, even with immunosuppressants.

Some people are choosing to go off the Remi after a period of time in remission. I will stay on it as long as it works for me and I don't develop any allergic reactions, because I was in a bad flare for more than five years without a break before going on it. Sometimes if you go off, it won't be effective or you will have developed allergies if you try to go back on Remi, and I don't want to take that chance. It's an individual decision, just like so many others we have to make. Everyone's UC seems to be different.