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Joining the Imuran Club

Ok, so not a good day. I went to see GI today. Thought I would be told to just continue with entocort for awhile, but no she pulled out the bigger guns and said we are going to Imuran. Crohn's is worse - more ulcers and more intestine involved than last year. Pentasa for a year and just started entocort 6 weeks ago. Not ready to hear I need to be bumped up to such strong meds. I think I convince myself I am not really that sick, then I see her and my denial gets blown out of the water.

This is going to be such a lifestyle change - bloodwork, getting immunizations up to date, getting the flu shot, worrying about catching colds all the time - things that obviusly scream out sick person.

I don't want this, I don't need this stress. Its been 2 years since diagnosis and I am tired of being sick and tired.
So sorry to hear your Crohns is worse :-( Try not to worry about the Imuran. I was scared too. I started it about 6 weeks ago and it takes s bit of getting used to.
But last couple of days, I've felt good. The least pain I've had in a year :)
What dose are you starting on?
Denial is a powerful thing. Its good to come out of it, and take steps to get your disease under control, before it spins completely out of control. Surgery is no fun, trust me.

The imuran could be just what you need to finally feel better and that is something to look forward to. Some people take it with very little side effects. I think all I had were some minor nagging headaches the first time around.
I am starting on 50mg and am to work up to 250mg week by week, unless of course it knocks my white blood cell count down too much, or I have an allergic reation to it.

I know objectively that this may be just the thing to help. Its weird - every other time the doctors have said to take meds about something I have been fine, just this time I have alot of trepidation.
250 mg? That sounds like quite a high dose. I started on 25mg and am now on my target dose of 100.
Yea, I was quite nervous about starting on it too. And you read the label in the packet and the list of possible side effects is really scary. Just keep in your mind that they are possibles. Also, you'll have the weekly blood tests for a while so will be being monitored closely.
I was a wee bit nauseous for a while, and had quite bad headaches when I got up to the 100 mg, but I was advised by my Imuran buddies on here to split the dose and that has really helped.
This is such a deceptive disease. I was on the Pred and Mesren and feeling a lot better, apart from bladder issues. A CT scan confirmed a fistula, but also a lot of active Crohn's which surprised me and that's when they put me on the Imuran. Last time I saw my GI he said he'd applied for Humria for me... even scarier?
I'm 51 and have been lucky enough, apart from a few blips, to be really healthy until now. I'm coming to some acceptance now that I am really quite ill. My GP and GI are very good and work closely together, so I listen and do what they say at the moment. And I do really think the Imuran is really starting to work - I feel almost 'normal' for the first time in a long time.
I haven't asked my GI how long he thinks I should stay on it, but I'm seeing him on Monday and will ask him and let you know.
I am turning 44 on Sunday. I probably have had this since highschool but was continually misdiagnosed as irritable bowel as CR has been normal even with quite a bit of ulcers and inflammation seen on the colonoscopy. So Doctors didn't order a colonoscopy years ago as all my bloodwork was normal.
I was told that going on Imuran is for maintenance as she feels the entocort is a short term drug. Hopefully the Imuran will put me in remission. I am having difficulty accepting I really am this ill as well. It pisses me off when everyone just says eat better and exercise and all will be well. I don't have the energy to exercise somedays. I see so many women running and biking, doing marathons and some days its all I can do to work, and make supper. I just don't have the energy reserves.
I feel for you, I was diangnosed a year And a half ago and it was not bad, just went on asacol and prednisone with flareups but the last 6 months I have been on pred more than off. Then ended up in hosp so I just started on Imuran yesterday. I am starting at 50mg and then going right to 200 I am only starting at 50 because the hosp did not do all the rewuired bloodwork initially so they didn't want me starting on a high dose till they get the results. Is it better to taper? I was worried about taking such a high dose but I don't know. Also, does anyone know if it helps if you take it with supper instead of breakfast for nausea? I kinda figured if I was going to feel sick, I would rather do it at home than at work.
My GI said to take it at supper as that will mean you deal with the nausea at night while you are sleeping. Although I have heard some people on here split it up and take some with every meal as they find that reduces the nausea. I don't know yet what I'll end up doing as I am only on 50 mg. The packaging recommends taking at the same time every day, so I'll most likely take it at supper as that will work best as my daily schedule varies.

I don't know if others have been told to start at that level or not. I haven't been hospitalized in a year or so, just not doing particularly well - lots of missed days at work, lots of pain. I even took a short medical leave to get rested as I was exhausted - slept 12 hours per day for a week.
Some people find taking it with supper or right before bed with a snack helps. It doesnt bother my stomach at all so I take it in the morning with all my other pills. My stomach is actually quite strong all things considering.
I think most people are told to taper up to the full dose, partly to watch and make sure that you can tolerate it OK. And steroids are generally for short term use. I've been on Pred for 5 months so hope I can get completely off it this taper.
I take half my Aza dose mid morning with a snack and the rest in the evening with dinner. Does definitely help to take it with food.
kllyeve, do you find you are tired from being up at night? or is it stress and stuff? I find myself up for a good hour or so every night (like now). Not sure if it is the pred keeping me up? Fortunatly my kids are older and I can rest throught the day on my late shift days. And I just started workin full time again a week ago.
I am usually up very early as my shifts start as early as 4:30 am, some days I nap and some days I just go to bed at 7pm.

If I can't sleep its due to either pain or my mind just won't shut off and let me sleep. Lots of nights lately I have such vivid dreams that I feel like I haven't slept at all.
Thank you folks for sharing all your experiences and feelings, especially with Imuran. I just started taking this, along with the Pentasa and Entocort, and thought I was feeling worse than before. I'm really tired, and this morning had my first experience with nausea. I go to a gym 3 times a week, but this morning was embarrassed to have to spend quite a bit of time in the bathroom. And after that had a hot flash spell and had to leave. Odd though, I haven't had any bloodwork yet. I may have misunderstood the GI, and will check on when that bloodwork should be done.
Yes, definitely check. My GP told me to have bloods taken ( full count and liver function ) once a week for 8 weeks and GI says every 2 months thereafter. Hope the side effects are only temporary. Mine settled down after a couple of weeks of the full dose.
I guess monitoring depends on your Doctor's preference. I have blood tests every two weeks, just to make sure my blood count doesn't drop through the floor. This will change to every month in the near future, after approx 6 months of therapy. I have to say, I've been very lucky, as I haven't had any nausea problems, although tiredness and joint pain have been a constant friend. But, each of us will undoubtedly respond quite differently to the same drugs. I'm currently on a therapeutic dose of 75mg and on 6MP rather than Aza - which may go some way to explain some of the differences - as Aza is metabolised/broken down by the body into 6MP, the 'active' compound, and therefore can have less side effects.