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Starting Imuran tonight, scared as heck!

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Ulcerative Colitis
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Posted 9/19/2012 2:59 PM (GMT 0)
Well I've spent the morning on this site and chron's formum to see peoples posts on Imuran and I like MYUC, the dentist, he posted he got  his life back after taking Imuran.

I only once had ONE DAY of remission and that was when I had a rocephin shot. Do you think just for that day that shot just back down my immune system and maybe that's the key for me since 5ASA do not do squat for me? THey help a little but I get more diarreah being on them then being off them. I feel better off them and doing a lot of fiber, but still that's not remission it's covering up.

I'm so scared to start this drug, but I need to try something difference it's been 8 years and I just had fissure surgery and I don't want that coming back with all the pooping going on.

My dose is 50mg and I see my GI on October 29th and that's still a month before I go on vacation so if needed I could get off of it and be ok for vacation should I have any side effects.

I've PRAYED SO MUCH about THIS, I JUST WANT TO HEAR A CLEAR ANSWER FROM GOD, I don't know what's right anymore to try. I get tired of wondering what should I do. I'm sure we all have been through this.

Posted 9/19/2012 3:05 PM (GMT 0)
you'll be fine!!! 50 mg is the lowest dose you can get so i don't think you'll even notice side effects. i hope you get the remission you deserve.
Posted 9/19/2012 3:13 PM (GMT 0)
Thanks bananagirl, I'm hoping so! I saw in your signature line LDN did not work for you. LDN did nothing for me too! I wished it did work, I've tried it so many times
Posted 9/19/2012 3:22 PM (GMT 0)
Honestly, I would try it and would feel just like you.  Def. scared but I would read all of the positive posts (like MyUC for example)  You can feel like you really tried alot of other methods.  I hope it will work out great for you.  Good luck and keep us posted!

B

Posted 9/19/2012 3:37 PM (GMT 0)
Nothing to be afraid of. I've been on 50mg for 8 years now, no problems whatsoever and it turned my everyday life around completely.
Posted 9/19/2012 3:38 PM (GMT 0)
Thanks hateUC it will either work or not right? So I'll give it a try. I'm thinking positively!

 

Posted 9/19/2012 3:39 PM (GMT 0)
Thank you too BeatUC I'm excited now to try it! You've all been great and yes, MYUC guy has been awesome to read about in his posts, gives me hope too!
Posted 9/19/2012 3:40 PM (GMT 0)
MYUC takes his about night, when you do you take yours? Day or night?
Posted 9/19/2012 3:45 PM (GMT 0)

I am on Imuran since June 2012, and it got me to remission.  I am on 100 mg, i take it after i eat dinner.  better take on a full stomach.  No side effects, i credit it for my remission.

You could try it and see how it works for you.  Yeah its scary but sometimes you need to take a leap of faith.  I was in a 4 year flare up and was more worried about colon cancer.

I have tried soooooooo many things (diet mod, no gluten, alternative stuff, probiotics, etc) and sadly nothing worked for me. 

I would say i am 99% there....

Posted 9/19/2012 3:48 PM (GMT 0)
SWEEEET i_love_coffee I love hearing these great stories, so I'll take after dinner and see how I do :) Thank you! How has your energy been with it? I read a lot of people are tired, are you?
Posted 9/19/2012 3:54 PM (GMT 0)
I just want to add more of the same very positive I was also really scared about being on Imuran
but was on it five years with absolutely no problems and it did help me achieve a solid remission and even the 2 flares I had while on it were much milder and managable without having to stop work or anything.
Also Azathioprine is now considered a very safe drug well tested drug by the medical proffession I even took it all through my last pregnancy with no problems and I entered into research with the hospital about breast feeding while on Azathioprine the jury is still out on this but I can say it seems to have had had not bad effect on my daughter the peds told me to look out for any weakened immunity things when she was tiny but she is now nearly two years old and she has never had anything ie coughs colds that even needed a trip to the Doctor.
OK I have loads more to say about it but I'm probably getting a bit boring!
I'm also praying it works for you to don't forget to give it a while though,I had a six week prednisolne taper and then it was another good month or so before I felt the full benefit of Azathioprine ( so 3 months in all) also my theraputic dose ended up 150 mg and don't worry about taking more as my GI kindly reassured me the any potential risks are the same wether taking 50mg or 150mg but the benefits of taking 150mg which seems to be the normal adult dose
( Well it seems to work really well then )The only reason they start you of at 50mg is to see how well you metabolize the drug.

wishing you all the best Anna
Posted 9/19/2012 4:04 PM (GMT 0)

therearemiracles:  as far as being tired, I dont think I'm more tired than before.  I work fulltime, have a second job,  2 ice hockey playing boys, i'm trying to sell my house and in my spare time i'm trying to write a book :)  I have enough energy to get through the day but at the end of the day I am tired and i definitely need a solid 8 hours slep.  But I was like this before the Imuran, so I dont see a drastic change.

The other thing, when i was flaring I could not drink coffeee and now that i am feeling better i have slowly reintroduced coffee back into my life (1 cup).

I started imuran  50 mg 6/6/12 and was also started on a quick 5 week taper of pred at the same time. gi said this was a bridge.  july 15 when i went off the pred i had some mild bleeding and dr upped me to 100mg and ive been fine.  I would say my blood and mucus are gone, every once in a while i see a spot of blood.  formed bms, mild mild urgency. i still have 3-5 bms a day.  I feel like i am doing pretty good and see the gi dr in nov again, so not sure if she will  want to up my imuran dose.  i feel like i am 99% there!

If i hadnt tried everything (except  LDN and fecal transplants) i dont think i would have been so willing to try Imuran.  I think its great that diet mod helps some but it did not help me...

good luck!

Posted 9/19/2012 5:41 PM (GMT 0)
therearemiracles, i think LDN is like any drug- works for some and doesn't work for others. i just don't hear LDN working very often at all, besides for InSoFla. my doctor said he used to prescribe it for crohn's but that the success rate was so low that he stopped. if it had helped me, i would've stayed on it for sure. i think for me, immune system drugs don't do much and that's why i never get a solid remission from them. i need to get to the cause instead of keep covering it up with medications.
Posted 9/19/2012 5:56 PM (GMT 0)
     I took 6MP for seven years.  The only remission I received while on it was the first two years.  I then started flaring yearly and then more often.

     On the bright side, I have a friend who was on it for ten years and she enjoyed a complete remission.  For some reason or other, her GI doctor took her off the medication and she flared almost immediately.  She is now enjoying remission while just taking VSL#3 and Rowasa.  Everyone is different.

     You will be wise to have your blood checked for an increase in pancreatic enzyme levels and liver enzyme levels.  I was on 50 mgm and my bilirubin was always twice the normal limits.  My GI doctor was not concerned about this, but when my pancreatic enzyme levels reached 4x the norm, he immediately took me off the drug until the levels returned to normal, two weeks later.

     When my condition worsened, my GI doctor tried increasing my dose of 6MP to 100 mgm.  I thought I was going to die!  Again, off the drug.  Then I was placed on Remicade, no luck and then Humira...nada.

Posted 9/20/2012 3:39 AM (GMT 0)
Hi - I have been on Imuran for almost 2 years now. I am at 150mg. I have not experienced any side effects. I was in a 4 year flare and like others tried everything else and nothing worked. I actually have much more energy now that I did when I was flaring. I was so tired from being sick all the time. Now that I feel fine I have my normal energy level back. I take mine at night right before bed. Although I have taken it in the mornings too and it didn't make me tired.

My only regret is that I didn't try Imuran earlier. I hope that it works for you! As others have stated it does take 6-12 weeks to take full effect so you do have to give it some time.

Good luck!
Posted 9/20/2012 5:23 AM (GMT 0)
It's scary but I sure hope you get a remission out of it. You've been struggling with this for as long as anyone and you are long due for a break. I didn't want to start 6mp, i thought it was the most evil, terrible drug possiblee... Now that I am on it and my UC is stable, I dn't have too much negative to say about it. It doesn't give me side effects, it's one pill a day, it's really not that bad. Hopefully it doesn't have some crazy longterm consequence but it's doubtful as it has been around for a long time. I don't believe in god, maybe that helps me accept the evil substance, haha. Good luck & remember, it doesn't work quickly so don't expect overnight results and don't get discouraged. If it works for you, it may be time to accept it's AI and not a bacteria or yeast, diet, parasite. That's kind of how I felt when 6mp worked for me. Almost caused me to lose hope for a misdiagnosis but I still have that glimmer that there is a light at the end of the tunnel - it's not logical but it keeps me going.
Posted 9/20/2012 1:25 PM (GMT 0)
I'm wishing you luck on the new med! You deserve a break.

I remember when I started on 6mp, I literally stared at the bottle for an hour - afraid to take that first dose. 6mp never really helped me but I know it has helped a ton of people so I hope that it will help you as well!

Just remember, if you start to have side effects such as headaches, nausea or fatigue, that it helps if you take it before bed. Your doc will be doing frequent blood testing yes?
Posted 9/21/2012 7:34 PM (GMT 0)
OMG after all that hype, my doc said WAIT don't start, I need to see her first. I have an appt on 9/26 to see her. She wants to do all new blood tests since It's been a while since I saw her last. I appreciate this, but boy was I ready to take the plung. I will be again, I just have to take a week.

Thanks for posting

Linda

Posted 9/22/2012 12:37 AM (GMT 0)
I was on Imuran for almost 7 1/2 years. 150mg being my highest dose. I was really lucky and had no side effects. It just stopped working or I would still be taking it!
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