Azathioprine and Trusting Docs?

I am really having trouble with the most recent developments with my UC. I've been flaring really bad for at least 6 months, and after my recent colonoscopy, the doc took me off Rowasa enemas and Uceris and on a 12-week course of Prednisone, also mentioning biologics.

I saw the nurse practitioner today. She seems very knowledgeable and confident that she can help me get this under control. She said the predisone is necessary at this point as the inflammation is all along the left side of my colon and that it is "severe." I expressed my doubts about biologics and asked if it might not be possible to maintain remission (after the predinsone) with my usual Apriso and Rowasa. She said no, that once it gets that bad, those drugs don't work. However, she did say that we should try azathioprine before going to biologics. She sent me for some kind of fancy bloodwork to make sure that I can tolerate the drug and said we should start it soon because it takes a long time to start working, and they will do increasing doses of the azathioprine while decreasing the prednisone.

I'd appreciate any input from anybody who has used this drug. I'm just very nervous about it and I feel unable to just put my health in the hands of the doctors. Do most people get second opinions before starting something like this? I honestly am scared and while it would be easy to just do what they tell me to do, I just can't quit doubting what they are telling me.

Maybe I need a shrink. :)

Hello, that sounds like the normal path of meds...I didnt experience any side effects except maybe a little fatigue. Take it at night right before you go to bed to avoid nausea.

It's a shame we can't take pred forever!! Good luck

Ya, Id tell those ppl to take the strongest laxatives available for a week and see how their opinions change. But like others said, your course of drugs is normal. Second opinions never hurt, and asking people on here is always a good place to start, since weve pretty much seen it all

In my opinion, since you asked for it, lol, I think it sounds like a good idea.

Moving on to scarier sounding drugs is really hard! I know!

But it sounds like the right course of action to me :)

Maybr holistic approaches could work in the future, far future, but for now you need to get this under control :)

Your fears regarding azathioprine and biologics are perfectly justified, as the efficacy of both drugs are questionable for ulcerative colitis (though not for some other predicaments like lung transplantation).

That the nurse practitioner is telling you that both the apriso and rowasa won't help your case anymore is a sign for me to bolt and find someone who knows what they are doing. Those drugs are fairly benign in comparison, and can and do help after short courses of corticosteroids.

Just remember you have the right to refuse any treatment you don't feel comfortable with. In my particular case, a locum GI refused to put me on any further biologics or immunosuppresants. I can't help but feel gratitude towards him these days.

There are always options out there on the table. Sometimes it just takes a little digging. I would recommend using the search feature for LDN, dietary mods, fecal transplantation, etc. :)

Good luck!

I suggest giving other brands of mesalamines a shot, Pentasa, Colazal, Lialda, Asacol HD, Giazo, sfRowasa.

I personally take a mix of Pentasa and brand name Colazal along with sfRowasa.

GI doctors are predictable in their treatment approach, you can easily predict what treatments they can offer you. Unfortunately, too many doctors quickly give up on the first line treatment of 5asas, not giving other brands a shot.

I take 6MP (similar drug) without too many side effects. It has been somewhat effective for me. I went a similar course- Asacol HD and Rowasa stopped working. Tried prednisone (had helped in past), sort of worked when in the flare, knew I needed stronger long term meds. I think that is a pretty standard course.

The difference is I still use the Asacol HD and Rowasa (as needed) in addition to the 6MP.

The holistic thing I get from a lot of people too. And I've tried a lot of different things (most with no benefit). Don't let anyone (this includes your medical team) guilt you into trying something you are uncomfortable with. Your body, your choices. I just tell everyone I've come to a place of acceptance that I need drugs each day to function and that I'm grateful the drugs are available to me. It's totally true!

Read, Think. Listen here, but take things with a grain of salt. People do not know your exact condition. It is useful to hear things here, but it is also a bit silly to trust anonymous and remote advice more than your physician who is looking at your colon and blood work. So take it all in, and then YOU decide.

I was very hesitant about 6mp, and when I did try, I think it brought on kidney stones - but it was in combination with me not reading the warning to drink tons of water.

The nurse is almost certainly speaking in probabilities and best practices. Namely, once things get to "severe" even while on 5asa, it is likely 5asa will not be sufficient after a course of pred.

But that is in general and on average. It includes people with a range of IBD, some also with IBS and/or with food sensitivities. It is incouraging you responded to the pred so well. So, your case could be different, but it is a question of whether you want to roll the dice against the odds. I did for a long time, and when I did try 6mp because I had been on pred for over 2 years, I got off 6mp as soon as I thought I saw a problem. Eventually Lialda and some nutritional stuff did the trick. I am very well managed now. - But it could have gone the other way.

I think you could also finish the pred, try maintaining with 5asa, and if you have another bad flare - then revisit the question. If you maintain for a long time, and if the next flare is not too bad, you may want to skip bigger-gun drugs. Just understand either way you are rolling the dice and hoping it is the right choice. It sucks, but that is really the deal.

Thanks so much for all the input. It really does help. I forgot to mention, that she has kept me on the Apriso--just not the Rowasa enemas (which were hurting to use after my recent scope anyway).

Those who said that it could be worth a try to come off the prednisone and try the Apriso (or other forms of mesalamine) and Rowasa for maintenance are kind of thinking the same way I am. I mean--how can it really hurt? If the prednisone gets the inflamation under control, and I stay on the mesalamine pills and enemas and it works--great. It always has before. If not, I can always start over with the prednisone and adding the azathiaprine. I'm also thinking that the flare kind of started right around the time they switched me from Asacol to Apriso. Are they really any different? Or maybe just a coincidence?

I'll have to talk this out with the nurse next time. I also have signed up for a Crohns/Colitis Advocate and hopefully he will have some thoughts--has he is local and might know of other local resources I can contact.

Thanks again. It helps to talk to other people who are wallowing in this crap. :)

i was terrified to start azathioprine back in January after reading all sorts of horror stories. I started taking 100mgs around the end of January and have been on it ever since. I can tell you I have had none of the scary side effects after 9 months and feel great. I think I am a little more tired than normal and was a little nauseous in the beginning but that all went away. I take it at night only so I think it helps me sleep to be honest which has been positive since I have been an insomniac for a good chunk of my 20's. I take that along with 6 asacol HD pills every day. I had a colonoscopy in August and my doctor said clinically I am doing great. I am hopefully long term nothing crazy happens, and my doctor did tell me when i am ready to have children some day he would work with me to either stay on the aza or come off it to have a healthy baby. I know everyone has their own experiences with this drug but for me so far it has been positive.

Not Happy Yet! said...
I started Imuran (azathioprine) on Monday.
Hard to tell what is a side effect, but I am crazy wake-me-up itchy.

I hadn't noticed itchiness before, but I walked the dogs in the sun today...
I Googled and some people had itchy as a reaction to sun plus Imuran.
Is that about the craziest thing?

Yes I know people who've experienced the same thing. So annoying! Hope it helps with the UC at least.