Hey tcdj, Welcome :)

I'm not really sure how to answer your question but I have been like you in the past. I was on Lialda for a good 6 months and for that time it never worked for me. I was always so sick, always running to the bathroom, it was definitely no way to live.

My doctor decided to put me on Imuran about 7 months ago. At first it really felt like it wasn't working but about a couple months in my body started feeling a whole lot better and i've now been in remission for about 5 months. It has been very nice. I haven't noticed any side effects with this medication for the time i've been on it. I mean I do have to get my blood taken every so often to make sure that nothing is going on with my liver but so far all has been well. I don't think that the side effects for these medications should turn you away. If they help you, that should be what counts :) But I also understand why you wouldn't want to take the chance.

I honestly wish you the best luck, and I hope you begin feeling better soon. If you don't get the answers you need hear, I would ask your doctor. They know the best thing for you.

Best wishes,
Kayla

Hi tcdj,

I have been on 6MP for about 10 months and I have not had any side effects to speak of. It helped me wean off the prednisone, which for me, was much, much harder on my body. I was very nervous about the potential side effects like you, but in the end, my disease was severe enough that I didn't really have much choice but to go that next step and I'm glad that it's worked okay so far.

I'm not a medical doctor, but I do have my doctorate in immunology, so that gives me some credibility hopefully :) I think the answer to your question really depends on the level of inflammation that you have going on. I know that people can have pretty significant symptoms in the absence of inflammation and in that case, I think it would be more of a quality of life sort of decision as to what you are willing to tolerate and what you feel that you can deal with in other ways like diet, OTC meds, etc.

However, if lingering inflammation is what is causing your symptoms, then it's really best to try and nip that in the bud. Having your immune system continuing to attack your colon, even at a low level, is really not ideal and I would guess that your doctors have weighed the risk from ongoing inflammation against the rare side effects that may come with 6MP/Imuran and have decided that the meds offer you the best course of action.

I know this is a big step though, so definitely talk with your doctors more until you feel comfortable with your decision. Good luck and keep us updated on how things go.

Amanda

Amanda and Kayla, Thanks so much for sharing your experiences. Im glad both of you are doing well on Imuran and 6mp. I live on a tiny island in the Caribbean, and we have no GI here, so a Drs visit means traveling. Ive seen Dr's in USA, and India, and its the American Dr's who strongly suggest for me Imuran or 6MP. In India the GI I saw did not disagree with that opinion but also said he would rather that I be more aggressive with mesalamine, and good diet. My inflammation is only the descending colon, so he would rather me use foams, enemas, and suppositories aggressively.

I wish you both best of health, and remission.
Seasons greetings
Dino

If you look at the post about the Ccfa webinar/conference call they are really making a move from treating symptoms and treating the inflammation in the mucosa lining. What Amanda said is right on! If you have underlying inflammation than diet and rest will never get you to true remission. They have been doing diagnostic tests to make sure your inflammation is gone when you say you are feeling better to ensure you are in remission. So let the mucosa be your guide :)

Hi tcdj, and welcome to the group. I was also diagnosed with UC about 4 years ago, and was really sick when first diagnosed (pancolitis). I've had quite a few flares, which I can always get back under control eventually with prednisone. I'm very apprehensive about trying anything stronger than pred, since unfortunately I personally know someone who had the rare side effect from Imuran. I was started on Asacol, and Cortenemas, which did get me into remission. When I get a bad flare, I would get back on pred. My new GI switched me to Lialda, and this seems to work better for me than Asacol. In more recent times, when I feel a flare getting worse, I have been smoking marijuana (which I realize isn't for everyone). I haven't been back on pred in over a year now; so it does seem to be working for me. My GI pushed Imuran quite a few times, but I just refused to take it (he was quite exasperated with me at times..LOL). I did read the recent article where the trend is to go with the "big guns" drug wise to get UC and Crohn's under control, but until something better comes along, I'm just trying to stay with Lialda, pred and marijuana when needed.