Immuran

[Josh]

Hey everyone. Iv had crohns for about 2 years now and have been off and on prednisone. I just started immuran 3 weeks ago. I started with 50mg a day for a week, then 100 for a week, now im on 150mg a day. Everything was fine while on prednisone and as soon as i got to 150mg of immuran it turned bad. I woke up 2 days ago with; extreme fatigue, bad pains, neck pains, weakness, loss of hunger, i never have a solid night sleep now, always up with the chills or slight fever, i feel dehydrated all the time now, it doesnt hurt to urinate but there is a slight pain... I just feel like im fighting to even get out of bed. I slept 14 hours lastnight and still feel like garbage.

Has this happened to you?

[Josh]

yeah i know.. i didnt have any problems except loss of sleep untill i got to 150mg.. i did call and i was told to drop down to 100mg because sometimes your body needs time to get used to the drug and increasing too fast can cause unwanted side effects

[kenny]

I'm finished week 4 and doing great. I feel no side effects at all anymore. I think I did feel a bit of a drain and maybe blurry vision at first but it passed.

I started directly at 175mg @ 170lbs.

I would rather take Immuran than Prednizone any day.

[Josh]

yeah man im always worried about starting new meds.. i hate the "unknowen" of whats going to happen when i take that stuff..

good luck with yours tho ;p

[Rob]

Hi
I've been on immuran for about 2.5 yrs @200mg per day

I've not noticed these problems that you hav been experiencing -thank god-
but at the time when my dr put me onto immuran he also put me onto mesalazine salofalk 1500mg daily.
This may be why i never had the side effects you all had???

[imisspopcorn]

It is not uncommon for some people to have problems with higher doses....Good luck, I hope you feel better now that you are on 100mg.

[Sunfire]

I started Imuran two weeks ago and just upped my dose to 100 mg on Wednesday and have been vomiting severely for the last two days. I am not sure if it is related to the drug or if I have the flu. Guess time will tell.

[Miss Rose]

I am a newbie to Imuran too. I have been taking it since early Jan and am now up to 150mg. I have had quite a lot of sickness but this seems to have passed now but I am feeling quite achy and tired. I also get quite a lot of kidney type back pain if I don't drink enough. Hopefully this will all settle down after a few more weeks. I also take Pentasa.

[RAW]

Originally Posted by Erazer

Oh......sorry to hear that.........I guess u were on 50mg for the first 2 weeks?

I hope you feel better...........let us know how u go..........I wonder if it is possible to just stick to 50mg?? I am going to ask the doc this week!

Apparently it has to do with our weight and metabolism as to how it effects us.

Frustrating MUCH!

You are correct Imuran is dosed based on your weight and the severity of your disease. I have been on 100mg for 2 years now, so far no problems!

[kenny]

1mg/kg of body weight is the target dose. That works out to 1ppm(1part/million)btw. The docs tweak it from there based on the bloodwork. I asked my GI specialist about starting at the full dose right off because of what I saw here. He told me he has treated 100's of patients with Imuran and MP6 over the years and only rarely seen any reaction to it. He told me if I felt really bad in the beginning to drop to half and creep up the dose by 1/2 a pill each week. But It really didn't bother me at all. Well see if it does much for my guts in a month or two when I have a follow up. I have blood tests every second week into April sometime and if all goes well I will drop to monthly tests for the duration of treatment.

My personal goal with this is to make the necessary diet and lifestyle changes to keep my disease in remission and get off the Imuran and meds all together. I hope it will be enough but who knows. I can tell ya I still hurt in my lower right quadrant but its not from inflammation. Its the resection site and where that tube was draining an abscess fed by a fistula. Its a funny tugging with minor pain but I am pretty sensitive to anything around there.

edit I made a mistake with the kg there. more like 2ppm. I forgot I weigh myself in lbs and not kilos. sorry

[RAW]

Originally Posted by Erazer

Hey Raw! Glad you are well! 2 years and no bad sade effects is awesome results!

How bad was your CD when u started Imuran. Mine has just reappeared in 20 cm of ileum next to resection site. No inflammation or activity yet, so the doc said I better take Imuran to keep it from worsening and maybe send it into remission. Fingers crossed! I am just scared to up the dose to 100mg.....

When I was D/C from the hospital I was on Pentasa and prednisone, when I tapered down to 20mg I would flare after that happened twice they stopped the Pentasa and started Imuran (1.5mg/kg). When I started Imuran it was the sickest I have been since I was diagnosed. In May I will be steriod free for two years and have had no significant problems. I really watch what I eat, make sure I get plenty of rest and drink TONS of water and have a gatorade a day! ha ha I know crazy but it works for me and I'm sticking with it!

I'm a true believer in positive thinking, 100mg will be no problem and you'll be in remission and stay there! Be sure to continue getting regular blood work and discuss any concerns with your md. And being crazy comes with it too, my doctor tells me I'm crazy all time LOL

[kenny]

Originally Posted by RAW

When I was D/C from the hospital I was on Pentasa and prednisone, when I tapered down to 20mg I would flare after that happened twice they stopped the Pentasa and started Imuran (1.5mg/kg). When I started Imuran it was the sickest I have been since I was diagnosed. In May I will be steriod free for two years and have had no significant problems. I really watch what I eat, make sure I get plenty of rest and drink TONS of water and have a gatorade a day! ha ha I know crazy but it works for me and I'm sticking with it!

I'm a true believer in positive thinking, 100mg will be no problem and you'll be in remission and stay there! Be sure to continue getting regular blood work and discuss any concerns with your md. And being crazy comes with it too, my doctor tells me I'm crazy all time LOL

yea I made a mistake on that. Im on close to 2 mg/kg. Forgot I weigh myself in lbs! lol 170 kilo would be one BIG kennyman

Sorry about that peoples.

[orchard archer]

I started Imuran back in 2001 and was on 150mg. Until a Year ago Then Put on Enbrel. White Count Issue.
Seems That Some people Tolerate it better than others. It seemed OK By Me.
My GP Mentioned he Thought It as a Preventative May have Kept Moderate to Severe Crohns Flare ups at Bay??
Don't Be afraid tell Your Doctor About Your Concerns.
I Call Mine Alot When I am Bad. They Don't Seem to Mind!

[Rob]

My specialist said it's about 2- 2.5mg per kilo that is the safe level
I've been on 200mg a day for 2.5years now my dr wants see about increasing it too 250 or so I'll see on Friday

[RAW]

Originally Posted by kenny

yea I made a mistake on that. Im on close to 2 mg/kg. Forgot I weigh myself in lbs! lol 170 kilo would be one BIG kennyman

Sorry about that peoples.

I was thinking it didn't make sense but just figured I was having a blonde moment! Because I have plenty of those.

[RAW]

Originally Posted by Erazer

Hey Raw!

Sounds like u have things under control! Lots of water and Gatorade sounds like a good trick!

U have inspired me to try the 100mg dose in 5 days....as told to do by doc. Thanks for the advice and support

As for the CRAZY part.......dont get me started.......5mg of pred made a jabbering bitchy nut job....my family and friends ran for the hills....luckily they came back when I stopped the pred...LOL ......take care! x

Good luck, let me know if you have any questions, can't promise I can help but I can certainly try.

Yes I have a few crazy pred stories too, luckily we can blame it on the meds even if it's what we were really thinking! LOL

[RAW]

Originally Posted by Erazer

Jejejejejeejch.........you crack me me up RAW! Pred or not.......crazy is as crazy does.....it's not us it's them.....right???

I am presently obsessing about Imuran and skin cancer.........he he he ( I am sooooo over obsessing about Imuran and hair loss for the moment...)

I am from Australia.....there is not much else to do here other than worship the sun.......especially with a little kid who wants to go to beach/pool all summer long. I really cannot imagine myself wearing hats and long sleeves while on holiday in Queensland......that would just be totally lame!!!

So! Am I gonna get skin cancer............well there is a good chance anyway.......since we are abit ozone layer challenged downunder! With Imuran thrown into the mix.........Erazer gets a tad frantic.........yet again!

Sounds like we have the same superficial worries haha

I didn't have any hair loss so I can't help with that one.

But the sun...

While you wouldn't know it by looking at my golden skin tone (not) but I LOVE the sun as well and I do not wear crazy hats and long sleeve cover ups. I am a little on the obsessive side with the sunscreen though, I wear 45 or 55 and reapply often a bottle only lasts me like 3 days. I see the dermatologist regularly, actualy I just had a lesion removed that had precancerous cells. As long as you take the proper precautions and get annual skin checks I think we can continue being sun gods!

Don't worry about being frantic my doctor doesn't call me crazy for nothing!

[Sunfire]

Well I am going to be calling my doctor tomorrow but I am pretty sure that I am allergic to this drug. I tried spacing out the doses yesterday and only took one pill in the morning and by 1 pm I was doubled over in pain and vomiting, shivering, fever etc. Not a fun place to be.

[uab grad student]

I hate to hear that Sunfire! Sounds like you are having a bad reaction to Imuran and better call your doc!!! I hope you get to feeling better real soon.

[Sunfire]

I was on 50 mg for 14 days and then was told to up it to 100 mg after two weeks. I was fine on the one pill but when I upped it to the two pills is when all the trouble started. This is the first time I have taken Imuran.

[kenny]

Originally Posted by Erazer

Sunfire.......that is not a good reaction.......what dose are you on?? was that the first time you took the Imuran ?

My GI started me off at 50mg for 10 days.....and I have to increse to 100mg after 10 days. So far 50mg is very tolerable, improving everyday. From what I have read here, Imuran is the kind of drug that needs to be slowly increased in dosage , or it may cause a severe reaction!

Hope you feel better soon!

I started right at 175mg.

I went to the GI clinic and met with the long term treatment team(as opposed to the surgical team I had been dealing with the past 4 months) This treatment team had my full medical history with some comments by my GP along with all the stuff from the surgeon. They explained a pile of stuff to me, handed me a prescription for Imuran and sent me for an Ultrasound and bloodwork. I was to hold off filling the prescription until the team lead called me at home from reviewing the days testing.

The next morning the guy calls me at home and says to start the prescription as everything checked out. I had been reading all I could find about Imuran since I got home the first day. I asked about this ramping up because of what I read on here. He said I was good to go but if it made me feel really sick I could try that. He really didn't expect there to be any problems and there wasn't.

I wonder if I got a check for that enzyme thing and thats what he was waiting on. Or if that blood test was just to check the baseline before treatment of the white cells. Whatever the deal I was told that he has treated 100's of crohn's patients with this over the years and only saw a few negative reactions. I dunno, Maybe I'm just lucky so far.

[kenny]

I cant help with the blood stuff. Sometimes I sound smart but thats just a cover I have training in plant science stuff, so some things I understand, but people science is way way over my head.

deleted link. it did not work anymore.

btw I got blood-work done that day prior, every week for 4 weeks after, and now every second week for two months. I will have an evaluation done by the time that is finished to see whats up and what changed.

[RAW]

Originally Posted by Erazer

Hey Kenny!

I was meant to have my bloods done when given the prescription.....but I thought I would wait till the Imuran kicked in.....maybe that is a bad idea! After what u said about the enzyme thingy, I should probably go get the bloods done. But I am not sure if what my doc is testing for is the same as your work up

this is what the work up order says: FBE, E/LFT'S, CRP, FE STUDIES, B12, FOLATE, Ca Mg Zn VIT D, ESR

Look familiar? I know most of it is for vitamins, but what is the other stuff??
You sound like you would probably know.......

Some of the abbreviations are different than here but I know E/LFTs are liver function tests, this is to be sure your liver is handling the Imuran, FE STUDIES, B12, FOLATE, Ca Mg Zn VIT D these are all vitamin levels
I imagine one of the test is for a full blood count we call it a CBC (complete blood count) to check on your white and red levels and your HCT (hematocrit) as well as other blood levels, another one we call metabolic profile which measures your sodium, potassium, calcium and things like that. I would assume that they are profile tests but I have not seen those abbreviations before.

[gibby]

You have a few tests there, your FBC is your blood count, tests for any huge changes in haemaglobin for aneamia, white cells for infection and inflammation markers, and platelets for infection monitioring. also being on imuran can bugger around with your immune system either heightening or lowering the immune response to every day things so that needs to be checked on. your CRP is your C Reactive Protein which elevates with extreme inflammation or infection. B12 folate is important vitamin which alot of us IBD-ians lack as it is absorbed in the large bowel and alot of ours are screwed and so is our B12, which in turn affects anaemia.

the important ones while you are on imuran is your LFTs, Liver Function Tests as imuran is a pretty harsh drug for the liver to metabolise and breakdown into dissolvable bits....one of the parts of imuran can build up in your liver over time and start to clog it up a bit, so while you are on it you will continue to get routine LFTs and a FBC checked every 4-6 weeks for the duration of time that you are on it...i still get mine done 8 years down the line, and have had no weird values yet, touch wood.
You are getting a full screen of bloods done and to be honest this whole lot will only be repeated at clinic appts and suchlike so dont feel you are gonna be drained of all your blood!

ooh get used to knowing your good veins and showing them to the phlebotamists....saves a lot of bruises over time!

hope this helps! ah the joys of the vampires stealing our blood,and for the most time you never hear what happens to it.....mysterious....


but i wouldnt change it for the world....imuran was the best thing to go on to when i needed it most....sorted me right out and was a pretty fab decision despite all the stressing about it! dont worry!

yvon x

[crazycanuck]

Well I started Imuran a couple months ago now and now up to 200mg/d. I weigh a touch over 150lbs and sometimes slightly under but generally 150. I'm 18 years old ifthat makes any difference but at about 100mg/d I had some troubles, passed out, no sleep, puking, pains....Anyways my doctor urged me to stick with it and suprisingly it all changed for me and I can honestly say its changed my life I've been pretty much in remission ever since and its the best I've felt in years.

I know everybody is different though and I hope you guys can have the same success I did and if not I hope you find a succesful treatment soon!

[Rob]

Wow didn't realize that this drug caused so many issues
my gp never mentioned any of these possible problems
he jus prescribed me 200mg straight up
luckily I didn't hav any problems

hope u all have some success with this drug as I hav had 2.5 years of success with it

[gibby]

oh no, as a nurse...(ahem however my patients are in the NICU so dont really count as adults...ahem...) i cant within the realms of my registration advocate the use of vodka.....but as a patient i can! so i will! Drink away!

DONT WORRY! Imuran will not effect the way you breakdown alcohol or change the way your liver breaks down alcohol. And you are kept such a close eye on that if your liver so much as sneezes (ahem) you will be montiored and the liver is such a hardy organ, its already breaking down a heck of a lot more with our regular drugs and even paracetamol, so i should maybe reword that scary sentence. there is a reason i work with babies,


. so eat drink and be as merry as your crohns allows you to be! enjoy the freedom imuran gives you, it was my saviour....the best thing to happen to me, and i love my beers.... no problems there have been on it for 8 years and only now coming off it, not becuase of side effects but cos its not working anymore.

i was almost on constant pred and starting aza got me steroid free for over 3 years! and the majority of people on it dont have any problems or major side effects at all. its like any drug, the side effects are often a list as long as your arm but the chances of you suffering them are extremely small...and the people who do, well its not the drug for them and there will be another one out there that will work (thats what i am hoping for now!)

so i am so sorry hun!with all my night shift rabbiting on i didnt read my post objectively..... must leave the nurse speak out of this forum.....duly noted

[gibby]

Aw thanks hun, awww will still really frustrating, got my appt with the GP who had finally had the sense to pick up the phone to the gastro cons, who seemed concerned and wanted my on prednisolone asap, and also told the GP to tell me that they would either phone me or send out a appt so i will defo be seen this week, but may get called for a flexi siggy/xrays first, which i totally think i need...

...lo and behold, i hear nothing today......sat all day feeling really low and all sorry for myself, didnt sleep last night due to nightshift blues i think and cos i started back on my prednisolone, only been a week since i finished my blast, so think that has screwed me up cos i am SO sore, like joints and muscles ache, and my back really hurts, llike i have slept in the bath! Still not really eating much but on the plus havent really been to the loo today, but that may just be some proximal constipation kicking in....feel bloated but at least gives the butt a rest

so there i go moaning again! feel its all i have done for weeks! So the update is that there is no update as yet....will wait til i get the morning post tomoro and if there is nothin then i need to phone the hospital, need to get this dealt with before its gone on too late and they end up cutting this thing outta me....which i will NOT let them do yet....

but after reading more posts today, i do feel positive, and know that when i get into the system, eventually, whenver that may be (!!) that new ideas will surface, and there may be change but i have to accept thats whats gonna happen. You realise on this forum that everyone is in your boat and its so uplifting.....especially being able to say assfire and describe your poop with other people

thanks again for your concern Erazer....oooh and crack yourself open a wee drink for me! We gotta have something to enjoy right!?

will keep you posted....and will keep my nurse talk but will reword it a bit better hee hee xx

[RAW]

Nurse or not you need delicious adult beverages! And I drink my fair share of vodka Vanilla Stoli mmmmmmmmmmmmmm

Gibby hope you get some answers and feel better soon!

Erazer...Gibby kicked my answers butt with that nurse talk! I work in a hospital on the Administrative side so I know a little more than most but not much and what I don't know I knock on the doctors door and ask, I'm really close to the GI doctors actually my office is in the GI clinic can't get much closer than that.

[fenway1971]

Hey Josh et al,
I went on 6mp (same thing as Imuran) last year. Went from 50mg to 75mg and then my liver rejected the higher dosage so I went back to 50mg. It's more than 9 months and counting on 6mp at 50mg and I have no complaints. Tapering from 75mg to 50mg caused extreme headaches and fatigue. I still suffer from some fatigue but can't complain too much.

My doc said going up in dosage wasn't absolutely necessary. Even at 50mg, it's a powerful drug.