Just started imuran and I'm super scared

[strawberrys78]

So, I started taking imuran today. I am going to take 1/2 a tablet for 2 weeks and then I will increase to 1 and so on until I achieve the right dosage. I have to get bloodwork done every two weeks.

I'm really scared to start this drug, especially since it apparently increases your risk of developing certain cancers. Just how much does it increase your chances? I'm only just turning 21 years old in March, so I have the rest of my life to live. I had a friend who just passed away from cancer at the age of 19, and it scares me because I know it can happen. People always think "it will never happen to me" and I know my friend thought this as well, but you really never know.

Would things like cancer show up in a blood test? I know skin cancer is a worry, and I am already at a higher risk since I am really pale and I have a lot of moles or whatever on my skin.

I've already tried pentasa and I still ended up in the hospital with a partial obstruction so it probably wasn't working the best, my GI wanted to prescribe imuran because my inflammation is in my small bowel (20 cm gap) where it joins to the large bowel and apparently imuran should work better for this area than pentasa.

I don't know, should I really be that worried? Are the side affects that significant? Or is it one of those things where it might increase by like 1% and people just go crazy talking about it.

Thoughts anyone? PS: I tend to deal with stress and anxiety (thankfully, since I started prednisone this virtually went away. I'm lucky, I've never felt better before in my life so far, trying to eat clean and the prednisone apparently has some sort of euphoric affect on me - not really complaining vs some of this side affects others have to deal with lol!! So yes as of right now I've never felt better but I'm still having worries about my future).

Thanks guys.

 

[strawberrys78]

And I just want to say. I know I have Crohn's Disease and where it is located etc. but I think I have it really good compared to some people who have Crohn's. I can go days without getting sick. Some people get diarrhea like 20 times per day, when it only happens to me every now and then, for example if I eat something I know I shouldn't. I don't get pain every single day, sometimes I can go days and days without getting any pain, but when I do get it, it's bad. It's really scary, crippling pain. Sure, I may get bloated sometimes and have gas, but my quality of life is good compared to a lot of people with the disease. I don't know if mine just isn't as bad, or I'm trying to look at the good side of things lol.. but I mean I guess if my GI wants me to take Imuran then she has good reason? I don't know. Am I in denial? LOL.

 

[Axelfl3333]

Hi strawb I think you need a long chat with your doctor to allay your fears,you can be sure it's prescribed for a reason and how likely are you to be on it for a long time? Your blood work will pick up anything going astray early,which is good.good luck,all the best

 

[Amanda89]

Hi Strawberry, I don't know if this will help at all, but something my mum told me was when they write that these drugs can have a slight risk of getting cancer, they have to put this for any documented case even though it was most likely just a very small percentage. Imuran can be a very good drug that has helped a lot of people, but if you have any worries you should have a chat with your IBD nurse or doctor

 

[strawberrys78]

Thanks guys. I told her I was worried and she told me that it only increases the risk by a small percentage and not to worry, but I've read conflicting things online (I swear the internet will be the death of me!!) Lol.

 

[FrozenGirl]

It really is a very small risk. Untreated crohns/ colitis has a higher risk of colon cancer ( as said by my GI) They are required however to warn you even if it only happens in 1 in 100 000 people. I was a little scared to stet it but compared with no managing symptoms, it is worth it.

 

[Buttercup]

Hi I started imuran/azathioprine and had all those same fears! It is totally scary but my thoughts are if it gives me a better life even if that could be shorter it's got to be worth the very very small risk! I'm on 175mg a day and I'm having surgery in Monday to remove my 10cm narrowing in small bowel! Gi thinks once ive had op hopefully azathioprine will then help control my crohns here is hoping! My ibd nurse said to contact her if you feel different in anyway when you start taking it as the smallest of symptoms could mean something! I get achy legs and arms and feel tired a lot ( that apparently could just be the disease though rather than meds)I was alwYs on the phone to my nurse and we now phone each other and just say hi it's me I'm sure everything will be fine just use sun cream and buy a big brimmed sun hat to help reduce the risk! Hope this helped x

 

[theOcean]

Hey there! Just wanted to chime in since I was concerned about Imuran too. You should be getting regular blood tests while on it (my GI has me get them once a month) since the primary concern with Imuran is blood disorders. I don't think the chance of them is too great though... honestly, I haven't had any side effects from Imuran.

My GI also said the chance of getting cancer (specifically lymphoma) was 10:10000 but it's a reduced risk if you're female and even then I don't think you should worry! Also: I'm also pale and have skin cancer in my family, but really, as long you treat your skin right and don't burn I don't think you have to worry about that either. (Plus, occasional dermatologist visits never hurt.)

Basically: just be vigilant if you notice anything seems "off", but otherwise I don't think you have anything to worry about!

A warning though: during the first week of taking Imuran you may get some brainfog and a couple other symptoms, but that goes away afterwards.

 

[strawberrys78]

Thanks everyone. I haven't really noticed that I am feeling any different since taking it, and it's been 3 days. I'm also taking pred as well (35 mg tapering off 5 mg per week). I just worry a lot, life is so short and I'm frightened that something serious will happen to me. Gosh I hate this disease lol

 

[hawkeye]

I've been taking it for 22 years with no issues.

 

[plainjane103]

I have been taking Imuran for just over 12 months now and feel amazing. It's like I have been cured. I was put on Imuran after a flare which resulted in severe arthritis. I literally could not walk. I had so much fluid on my hip and knees, extremely painful, was in hospital on morphine for a week. At first I found the Imuran gave me flu like symptoms and I developed lumps and bumps on my skin but it all settled down and everything seems normal now. I can not believe how fantastic this drug works for me, especially when I read about other peoples negative experiences. If it works for you... fantastic, it will change your life. Unfortunately there are always some risks associated with taking medications but for improved quality of life I think it's worth it. Don't worry about cancer and everything else, one of the positives of having a chronic disease like Crohns is the regular blood tests and medical monitoring. If something sinister develops chances are it will be picked up early. Actually much better off than those who don't have regular health monitoring. Relax, stress makes your Crohns worse. Good luck!

 

[mamagus]

I'm jumping on this post 3 years late ... Strawberrys78 - how are you making out with Imuran?

 

[Jackman]

I'm jumping on this post 3 years late ... Strawberrys78 - how are you making out with Imuran?

LOL..was just wondering the same thing! My son is 14 and about to start the next step maintenance drug (Imuran/MTX or Remi) and I'm so scared....just wondering how you've done on it???

 

[Ladyslipper]

I also can relate to Strawberry78 concerns about Imuran. I started this about 1 month ago - started on 50mg for 2 weeks, then to 100mg for 2 weeks and tomorrow I go up to 150mg after I get my bloodwork done and check with my GI if I can increase to this final step. So far for me my bloodwork has been ok. I was just diagnosed in March with crohns involving my small bowel and terminal ileum. I also took Prednisone and tapered off this - this I found to be very difficult being on the Prednisone, due to side effects (mostly no sleep, labile moods, etc.) So far things with my bowels seem better - I still get aches in my abdomen, but much better than before. My biggest concern with the Imuran is being so immunosuppressed. My GI is arranging vaccinations for me (i.e Hep A, B and C and I already have the flu shot). I am very careful with handwashing and try to avoid being around people who are sick. Anyways, so far so good for me on the Imuran. Keeping fingers crossed.

 

[Lam123]

Hi! I know how you feel, I was pretty much the same age as you are when I went on imuran. I got regular blood tests done and everything was fine. It gave me remission for 10years! I also saw a dermatologist to make sure nothing was happening with my skin, since I am fair skin aswell. I make sure sunscreen is worn all the time. I have crohns in the same spot as you aswell and also started with Pentasa.

Good Luck!

 

[Deepa]

Hi I am a new bee in the forum, reading the messages is helping me to come out of the fear of crohn's and Imuran. I have just started 50 mg imuran today, noticed a bump in front of my left ear and swollen gland behind the same ear, should I call my doctor ASAP? Or be vigilant for few more days?

 

[plainjane103]

hi Deepa, I would just go visit the GP to make sure it's nothing scary and put you at ease. Imuran caused some lumps/bumps in my breasts. I went to the GP who immediately told me not worry (it wasn't breast cancer) just an infection in my milk ducts and put me on a course of anitbiotics. They were gone within a couple of days. Don't be scared of immuno's, one your body adjusts everything is normal. I have had no more coughs and colds than usual and don't get sick when my kids are off school throwing up. I had a flu shot last year but forgot this year and I'm fine

 

[Deepa]

Thank you

 

[bambam66]

I have just joined this forum,, as I have been looking to find out,, how many other people like myself, now, has Bowens Disease, ( skin cancer) from taking aza long term?
I was taking it for 12 years,,, & I was in remission from day one,, & I had no adverse symptoms, in all the time I was taking it.. I actually got my life back after 12 years of illness, many hospitalisations, operations & procedures etc...
Two years ago, I had a growth removed,,,& the dermatologist more or less blamed the aza,, ( because of the private location of the growth,,,, a place, on my body that never sees sunlight... My GI consultant wanted me to continue to take aza,, of which I refused,, Ive been 2 years now without aza,, & thankfully, Im still in remission.... After saying that,, I now have another skin growth & I am awaiting a dermatology appointment to get it checked.... So to me,, aza is a double edged sword.. I have had all these years in remission & have been able to get on with doing things with my life..However, on the flip side of this,, Ive endured skin cancer removal once, with a possible twice hanging over me.... I dont want to scare anyone just starting out on aza,,But I want people to be aware that the rik is
a very real one & more common... I just wanted to share my experience.... Can anyonelse relate to what I have been through??? I would love to hear about it.. x

 

[Miss Underestimated]

We all have to get checked for skin cancer I think. I know I was told to go once a year.

 

[bambam66]

Thanx for replying...I think,, I was started on aza,, when it was relatively experimental.....They didn't put any emphasis on the possibility of skin cancer,, although it was mentioned, But only briefly.... So I don't think they realised, at that point ,just how likely it could be...At least they seem more aware of the dangers now,, & are warning people of this possible side effect.. As I said I was on it for 12 years,,,with no skin checks,, only the usual 2/3 monthly blood counts..
Im pleased that Consultants & GP,s are more serious about watching & warning people to be on the look out for any skin problems.. Sadly for me,, its too late......

 

[BlackLotus]

bambam, did you go out in the sun a lot during the 12 years on imuran?

 

[bambam66]

Im not really a sun worshipper... Im not one of those that sits out from morning till evening, at home or on holiday..... In the 12 years of using aza.. I probably had 6 holidays in sunny climates.. & back home,,I live in the north of England,, so we don't get many sunny days... & even when we do,, Ive never been one to sunbathe,,.

 

[Sarah2000]

Crohns is a horrible disease and my heart goes out to all of you. My mother has it and found out probably in the worst way in 1994 when her bowel burst and spent 26 days in intensive care. She also went on this new drug after various surgeries to sort blockages and had a great reaction to the drug, sadly after around a couple of years then had breast cancer and also Bowens disease with 3 removals of skin issues, she has now come off the drug and I pray that she now has no more flare ups. Just please all be careful whichever drugs you take they may cause problems and check yourselves regularly.

 

[BlackLotus]

@Sarah2000, I am sorry to hear what your mother and you had to endure. I have taken Imuran for a year and just stopped it ~1 month ago. I am currently on Humira only. I got a blood test many times just to make certain everything is okay. I do feel better w/o Imuran.

 

[PazE]

Hi, I just found this old thread and I too am afraid to start Imuran. It has a lot to do with the fact that my GI did not explain anything to me. I thought I would be on it temporary like 3 months. But that does not seem to be the case from what I am reading. I am switching GI's but in the meantime I am in limbo. Paralyzed by fear and lack of information. I was only diagnosed With Crohn's within the last month and feel as if my doctor has thrown me to the wolves. :confused2: