Imuran

[yilbit]

Hi everyone, I'm new to this site. I've had Crohn's since 1976 & had several bowel resections throughout my younger years. I've maintained my disease well over the last 20 years and been without medication for most of that time. However, I've recently started taking Imuran for arthritis & I'm aware that is known to improve Crohn's. My question is, what exactly should I notice different about my Crohn's that might improve while taking this medication? And how long could it be before I see any improvement in my condition? I'm just not sure what to expect from it. Any insight?

 

[Rebecca85]

For me, I noticed an improvement in my BMs. I do not suffer with diarrhoea, but I was going up to 5 times a day, rarely formed. Now it's once or twice, usually formed. Secondly, I found I was able to increase the variety of foods I could eat (from strict low res diet, to most things except nuts seeds and skins). And even then, rather than being doubled up in pain from eating something I shoildn't, I get a bit of tummyache and a bit of diarrhoea.

 

[spingirl]

I am just about to start taking the generic version of Imuran...I don't have the bottle in front of me and its really late but...we should compare notes on what it does to us/for us (hopefully more for us than to us). I just read something on a thread about Remicade causing hair loss...I hope that isn't true of this too. Although its better than the other side effects. I refuse to read the pamphlet. I'm too wigged out right now starting it...but I don't think I have a choice...unless I am ready to have my colon out...which I am not...not just yet...

 

[STLGirl]

I also am about to start Imuran and I'm also very nervous about taking it. Before my Crohn's came along I never took any meds except Advil to help with knee and back pain. So taking all these scary drugs with huge side effects is freaking me out. But like you said spingirl, I guess we don't have a choice.

So cheers..... here's to pill popping and improvements!! :beerchug:

 

[littlemissh]

No side efects for me so far..been on for nearly 3 weks ...though still lowish dose increase dose again in 2 weeks. Not a single hint of side effects. Hopefully I am not speaking too soon and also hoping you will be the same STLgirl!

 

[STLGirl]

Aww thanks littlemissh and I hope you still stay the same with no side effects as you increase.

 

[Astra]

I wish you all lots of luck with Aza, I was allergic to it and had to stop taking it.
xxx

 

[spingirl]

Ok SO so I took my first dose of Azathioprine 100 MG this morning at 9:30. I called my pharma and she said she never heard of it making people puke. Ok - who do you think I believe...YOU GUYS. So I said ok...I have like 7 pills to take this morning and 4 of them will upset my stomach...I would like to take them all early and with my meal. I got all 7 down with my bagel. The last 2 being the Imuran (Azathioprine). So I am like being a baby all morning. Dog came in all wet from the snow and I got a little queasy...and I was like...ok here we go...but really... not anything other than a little queasy. Just one dose. I know after 2 weeks I am going to 150MG so maybe that is the trigger...or maybe its the next few doses. I do feel like its a little harder for me to read today...not as focused...is it my imagination? If this is as bad as it gets then I can handle it...I am wondering...those of you that were very sick...were you sick right off the bat? I have to go back and re-read these posts again. I do have a funny taste in my mouth. It could be the Prednesone too...just one bowel movement after lunch...dare I say it out loud...i don't want to jinx myself...but I am also on 20MG Prednesone nad 800 Asacol HD and I take 2 tabs twice a day...I think that must mean I am on 3200MG? I don't even know. I have to be better with this. I better just carry it all around with me in my pocketbook in case I ever have a reaction. STLGirl...I hope you are having similar results or even better! I was so excited to post today. I am grateful to have found this group. I hope I am not overposting. I am just so excited to be here. Are my ears getting a little itchy? I think I might have to stop thinking about it...I am going to drive myself crazy...

 

[e13 boy]

When i was on Azathioprine within 2 weeks i started to feel sick every day but i only started to be sick after about 6 weeks.All the side affects i got started as mild,then slowly got worse.I tried as hard as i could to put up with the side affects as over 4 months it was bringing the CD under control.
Following the below safe WBC count,severe fatigue,vomiting,headaches & flu
at the 4-5 month point i had to stop taking Aza'

 

[AZMOM]

Just a thought......we give our daughter her 6MP (like Imuran) at bedtime. That's how they administered it in the hospital in case there was nausea. The hope was that she would sleep through most of it. So far, that has worked like a charm. Do you have to take it in the morning?

:hang:

 

[littlemissh]

Perhaps I'm being too complacent about no side effects so early on. I think I might be an emu and stick my head in the sand and hope for the best. I don't want to go back to vomiting....

 

[spingirl]

Ahhh...I was hoping I would have known from the first dose...I guess that is wishful thinking...still have itchy ears...head...

Thanks e13boy. From your profile...sure does sound like you have had a rough time of it. Is what you are on now working for you? I sure hope so. Did your WBC come back? Did your symtoms take a while to stop from Aza? I can't imagine feeling sick every day. How do people work? I am laid off right now and have my husband to take good care of me but I will be going back as soon as I can find a good job...this will be tricky...

 

[e13 boy]

Hi Spingirl

Once i came off Aza(150mg) my WBC went back to normal.
When i was on Aza i saw a gradual decline in CD but once i got to 16-18 weeks i finally got a formed BM.
I went on 6mp a month later & had all the same problems,but the muscle ache/fatigue was even worse.

Since sept '09 i have been taking Serovera AMP which i am very pleased to say i have gone on to have life changing success with.I no longer suffer with any symptoms of CD which fluctuated from mild ~ severe for over two decades.

 

[chefcutiepie]

I am also about to start imuran and feeling nervous about it. I agree that we kind of have no other choice right now, as we all want to feel good and try to avoid surgery. I am also off work so at least if i do get sick with this I have the luxury of not worrying about work and just staying in bed... god i wish they would just find a cure already.

 

[spingirl]

Well, it seems like everyone tries all the same meds...there must be some protocol that dictates what they try first...maybe according to risk? I think its just so interesting that one drug will work miracles for one and not another. I am going on almost 8 hours after my first dose today and only had one BM so far. I was having like...a LOT yesterday...but I did also start back on my prednesone so I'm not sure if its the Pred or not...but even on Pred I ususally have 3-5 a day...formed and nice...but soft... I was happy with that but this is strange for me since I have been eating like a horse and not going after I eat...so strange. What I am finding is my side is hurting from the strictures though. Its weird...I guess when I am going all the time there is nothing there to constrict...now its full because I am not pooping...I don't know exactly what is going on...I wish I could see inside...oh dear... probably not a good idea. As for a cure, Chefcutiepie...they can't even make preps that we can choke down. Geeze...I told my GI doctor that had a room full of fellows in one day trying to tell me stuff...that they should make it required that before getting to perform a colonoscopy on anyone they must have to drink the prep themselves. Everyone can use a good cleansing now and then...no? Wee need some more famous people to get behind the cause...but I think there is still a stigma to it...I was dissappointed that Amy Brenagan didn't speak out on the issue...Still itchy but only when I am on this site...must be in my head...thinking about it...I will say...my belly is really big and bloated...I am not used to having anything in there for long. I was bloated before but now...I look about 7 months preggo! I should start a thread on that subject on the women's forum...how embarrassing is it to have people ask you if you are pregnant...and you are not! Ugh...

 

[jaycee]

I hope the azathioprine works for you. I've been taking for it over a year and it seemed to make a difference at first, but now it doesn't seem to be helping much. My GI messed around with different dosage and schedules for awhile. We settled in at 100mg twice a day.

Good luck!

 

[spingirl]

My GI didn't say when to take it...just to take it...and he said to ask the pharma about when bcause I was all upset taking Prednesone too. I was worried about eating for the stomach upset...but you have to keep in mind...I have acid reflux and can't eat late at night before bed or i would try the night thing. The pharma told me to eat something with it but didn't seem to care when I took it either. If it works at night for your daughter I would not mess around with a good thing. Just my two cents.

So - anyone have hair loss? When did it start? I'm already all fat faced from the prednesone...that is what I need now...fat AND bald. Alive though...ohhhh...I am starting to resent this colon. I didn't really understand why not keep it at all costs but these costs are getting higher and higher...and I am just now on my way...I just can't imagine what some of you are all going through. The kids...I just feel so bad for the kids. I had no idea how many little ones have this disease. Shame on me for not being more informed about my own disease.

 

[Crohn-Magnon]

spingirl....as a recent inductee to the Crohn's club a few weeks ago, I started on Lialda, then "Super-sized" to add Pred and Imuran. I was more afraid of the Pred more than anything. So far, most of the side effects are manageable. Besides...genetics took care of the fat and bald part for me. Already overweight (though have lost a lot prior to my CD Dx) and joined the "hair-challenged" club in my college years (maybe one of these will finish the job genetics started ).

I too was told to eat with taking these meds....I take mine in the morning (especially with Pred...supposed to increase your energy...still waiting for that to kick in). I also have stomach issues...couple notches on my health belt for bleeding ulcers. So I've been taking PIP's (Proton Pump Inhibitors) like Prevacid and Protonix for a long time. I was always told to avoid the 'Riods, because it could jack up my stomach, yet I'm taking them. No stomach issues yet.

And one last thing. Even though I'm a newbie, there is no "shame" in this disease. Sure, it is very stressful and overwhelming (especially when you're new to it). I've poured myself into reading and research. Yes, it can be information overload (and is in my case), but try to take positive approach. I've had my ups and major downs over the last few weeks, but shame is never applied to this condition.

I've learned that this site is tremendous asset and a lot of caring people are here to help, and offer a virtual hand to hold.

Take Care.

 

[STLGirl]

Hi spingirl. I just love reading your stuff, you are so fun to read, I love the way you just tell it like it is and with such humor, you make me laugh. I was thinking, if you were my neighbor I bet we would be great friends. I just wanted to pass that on and let you know you had a fan. :ysmile:

 

[spingirl]

STLGirl...you just made my day...that is a very sweet post. My 13 year old came in yesterday when the emails were downloading and he said "you joined a forum"? It was the "way" he said it...Like I am a dinasour or something. I am printing this out and showing it to him...if he ever gets out of bed this morning!!! Have a great day.

 

[kenny]

I have been on Imuran for a year. This is a very slow drug that gently works to limit the production of immune associated cells in your bone marrow. It is a slow process of lowering the counts. This drug is processed by your body producing 6mp within your system and has been around for a very long time with a well proven track record and known to be very safe.

What it does with respect to noticeable effects is simply to reduce immune response. Anyone with allergies or hayfevor knows exactly what an acute immune response is, but chrohn's is a chronic response so the changes are not really tangible.

I was placed on Imuran due to the aggressive nature of my diagnosis and did notice some changes within the first month or two. Persistent acute allergic reactions to environmental allergies were diminished. Reoccurring joint swelling and pain was lessened to the extent that I was able to move freely without the aid of nsaid's. I was also taking Allopurinol to treat gout and was able to come off that as well. The only med I currently take is Imuran and it keeps allergies, fistulization and arthritic joint pain all at bay. I think I am very lucky so far and hope it keeps working for me.

 

[STLGirl]

Spingirl, I have two boys and KNOW what you're talkin' about when you said "if he ever gets up" !! I think they would sleep all day if I let them. Those silly boys! And PS, I'm glad I made your day.

Kenny, thank you for that great insight. I hope the relief from joint pain works for me too. Sometimes I can hardly walk when I first get up, so I look very forward to that relief! Sometimes I walk like an old women at 54

 

[spingirl]

@ Kenney: If Aza is slow moving and gentle...then how come I am seeing results so quickly? I go a few times in the AM before I take it and then it seems like it totally stops until the next morning. Dare I say...like a normal person? I don't even know what normal is anymore. I realize I am also taking Prednesone & Asacol but even on Pred I still will go after every meal. Hmmm...Don't get me wrong...I am happy but of course...now I think I am getting backed up and will have diff issues. I feel full but not really any pain/vomiting (yet). I want to be happy about this but lets just say I'm in day 4 and "cautiously optomisitic". Its just so weird...not to poop so much. My spirits are much better...maybe it all has something to do with it...definately a vicious circle...when in a flare...you get all upset and you are tired and run down and drained from symptoms...and that can't be good for you...ugh...such a disgusting disease. I know there is no shame but...ugh...just ugh...
@STL girl - we should PM - I could talk to you for days. Would like to hear more about what you are taking. Probiotics...I am starting to eat (choke down is more like it) Greek yogurt. I am supposed to take D but they didn't tell me D3 - not sure what the difference is. Flagyl really bothered by acid reflux - recall it from years ago. Once back on track and off Prednesone I am going to add supplements. Right now I am just taking too many pills...

Love you guys. I keep saying it but I am just so happy to have found this forum.