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side effects of Imuran / Azathioprine - freaking out

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Posted 7/24/2008 10:08 AM (GMT 0)
Ok, so been on Azathioprine for about 14 weeks now and feeling well, currently on 5mg pred.  The initial leaflet that I got with my Azathioprine said "there may be an increased risk of skin cancer and or developing cancer of the lymphoid tissue" spoke to my doctor about this and he said that he treats hundreds of patients with this drug and in the last 5 years only had one patient who had developed some kind of cancer never mentioned exactly what it was but said the benefits outweighed the risks and the risk was very small.

Well just got new batch of tablets and after experiencing pain in the joints of two of my fingers I decided to look at the side effects leaflet which came with the new batch of tablets to see if could be associated with azathioprine. Well the leaflet has changed, the side effects are now under a number of different headings, side effects occuring very commonly, side effects occurring commonly, s e occuring sometimes, s e occurring rarely, s e occuring very rarely. Unders side effects occuring commonly the following is listed certain types of cancer (lymphomas, cancer of the cervix, vulva and skin) so now I'm thinking it is common to get cancer from taking this drug so does that mean it is a high risk.

Spoke to my husband about it last night and he doesn't think I should take it, will speak to my doctor too but thought I would throw it out to all you guys to get your thoughts first as I have found this site very helpful. I obviously want to take this drug if it is going to keep my UC from flaring but I have young children and I lost my mum when I was young and my biggest fear is to die young leaving them so don't want to increase my risk of getting any life threatning illnesses. Maybe I am blowing this out of proportion but common to me says there is a good chance that it could happen to me.

Posted 7/24/2008 10:55 AM (GMT 0)

Not to make light of this, but doctors always say the benefit outweighs the risk:  It's not their body, so there is no risk to them!

Yeah, there's an increased risk of cancer with these drugs, and I believe the commonly accepted rule of thumb is a four-fold increase of that risk.

Personally, I won't take them.  I spoke to a GI recently who said it's not uncommon for people to forego these drugs and he doesn't like to put his younger patients on them. 

Posted 7/24/2008 12:39 PM (GMT 0)
Ive been on Azathioprine for a year and although ive had mouth ulcers, sore joints, bruising easily and hair thinning on the odd occasion ive been fine.

I work in a dermatology centre and yeah there are risks of skin cancers when you take azathioprine but you can really help with the odds of getting them.

1) stay out of the sun where possible especially from 11:00 til 16:00

2)wear sun block from april til october

3)wear a hat if you do go out

also be aware of the moles or skin lesions you already have !! the skin cancers related to azathioprine arent deadly if caught early.

where i work we use azathioprine a lot for kids with severe eczema.

I dont worry about it. just take good care of yourself. Id much rather the azathioprine risks than being in a constant flare or steroids.

 

Posted 7/24/2008 12:53 PM (GMT 0)
I've been on azathioprine for over ten years and have had no side effects. My GI claims that the risks are for people on much higher doses - that is, those who are taking it to prevent rejection of transplanted organs. This year, for the first time, I was told after blood tests that my red blood cells were enlarged. A hematologist told me not to worry. The cause was azathioprine. There is no problem with large red blood cells, as long as the cause was known. So, that's my story. I don't like taking it - but prefer it to being in a flare or to taking pred.

M
Posted 7/24/2008 1:07 PM (GMT 0)
Remember that transplant patients take a cocktail of drugs to stop organ rejection. Nopt just Azathioprine.

They can also take prednisolone long term, ciclosporin and loads of other immunosuppressants depending on the individual cirumstances of the patient.

UC patients arent on a greatly lower dose of Azathioprine but we dont take the other drugs that suppress our systems more.

I work in a hospital and i still take the drug, shows how worried i am doesnt it.

No one could ever say its 100% safe to take it or 100% unsafe. I guess its down to each persons preference.
Ive already made my own decision not to take Humira or other biologics if i ever get to that stage for my own reasons of worry.
Posted 7/24/2008 1:35 PM (GMT 0)

Conclusions: Our data suggest an approximate fourfold increased risk of lymphoma in IBD patients treated with azathioprine/6-MP. The increased risk of lymphoma could be a result of the medications, the severity of the underlying disease, or a combination of the two.

http://gut.bmj.com/cgi/content/abstract/54/8/1121

Posted 7/24/2008 1:51 PM (GMT 0)
thats very interesting. i wasnt totally aware of figures for lymphoma. Im very aware of the skin cancer risk because of where i work.

doesnt change how i feel though.

Im happy on Azathioprine at present. Havent had any problems UC wise for 10 months and havent had any major side effects. so if it aint broke dont fix it.

I def wont use biologics. Like i said everyone has there own hang ups.

 

Posted 7/24/2008 1:53 PM (GMT 0)
Not to be a jerk, but I'd like to know how you feel in 20 years.
Posted 7/24/2008 2:10 PM (GMT 0)
like i said each to there own !!

ill take my risks,

nothing is ever certain, dont be so naive and judgemental to try and undermine other peoples choices. I hardly think you are qualified after reading something online which could very well be wrong.

 

Posted 7/24/2008 3:18 PM (GMT 0)
Sorry, didn't mean to undermine your choices.  I just posted a peer-reviewed study and wondered aloud about the long-term safety of a drug that's been shown to increase lyphoma risk.

Given that I'm expected to stay on any mediation for 40+ years, I'm a little more circumspect in my choices, especially since uc is a poorly understood disease, current mangement of which has changed repeatedly and is now treated as an autoimmune disease.

Really, if you don't trust Gut, I don't know what you can trust. . . . 

Again, sorry.  Be happy in your choice.

Posted 7/24/2008 3:35 PM (GMT 0)
I haven't been on aza that long (just over a year now) but I have had no problems on it. I even took it throughout my pregnancy and my little boy is doing just fine. I can't say where I will be in say 5 years or so, but right now it seems to be doing it's thing.

But to each their own. If you feel better not taking it then I would talk to the GI and find out what else is out there.
Posted 7/24/2008 4:03 PM (GMT 0)
Every treatment we can choose from has risks, we just have to choose the ones we're willing to take. Even non-treatment has risks. Not our place to judge the risks for others, or to tell them what they should do. Also it's risky to say "my way works better" because tomorrow whatever method we're using may fail us.

Tums, I will tell you that long-term use of steroids is far more likely to give you devastating effects than Aza is. None of them are cancer, but some of them can really give you misery.

Bottom line, we all pick our course. I hope whatever solution you pick works out well for you.
Posted 7/24/2008 5:51 PM (GMT 0)
My Dr wants to put me on 6mp and now I'm not so sure. I feel paralysed sometimes when it comes to this stuff. There are risks to everything as you've said, but the thought of cancer freaks me out. YOu don't have to stay on 6mp long term do you? Do they use it just to get flares under control?

Posted 7/24/2008 7:08 PM (GMT 0)

Its a cancer risk not a cancer definate. Thats the point i was trying to get across.

There wasnt any offence taken. Just dont want to develop a point and laugh culture here. We are all here to learn and share knowledge, not try and enforce our opinions.

My way of thinking is.. im fine on Azathioprine why worry !! i get checked every 3 months anyway. what will be will be.

nothing is ever certain. i mean even pentasa has side effects.

id rather have the disease controlled for as long as possible.

Posted 7/24/2008 7:24 PM (GMT 0)

I feel the same way, that I'd rather have the UC controlled. Right now, I take a lot of meds, each with a lot of scary potential side effects. But that one word, potential, is key here. I prefer to have "instant" relief from the UC now, & I don't worry too much about what may happen in 20 years. Heck, by then, my colon will most likely be out anyway! My GI is always on my case about the increased risk of colon cancer, & how hard it is to diagnose it when you have multiple psdeudopolyps, as I do.... that's his rationale for surgery.
Not the increased lymphoma risk due to the meds. I wonder, that study you linked, seconder- does it state in what population they are finding the lymphomas in? I've been told by many GI's that the increased lymphoma risk has been found to occur in the pediatric male population- neither of which apply to me! We can't discount the increased overall risk of colon cancer just by having IBD also. It is a tough call- each individual has to make their own choice & take their own risks.

Posted 7/25/2008 12:39 PM (GMT 0)
I've been on Azathioprine for about seven years. No side effects that I can tell except I bruise more easily -- which is not saying much because I've always bruised easily. I now look like a walking bruise.

I was very troubled by the potential for, especially, lymphoma. But I might be dead in five years. I needed to get my UC under control, and I did. And I recognized that these are antirejection drugs and imagine the worst side effects will be experienced by those on the higher doses.

Everything you put in your body has the potential to hurt you. It's all about weighing the benefits against the possible bad outcome. For now, taking my Azathioprine is a no-brainer. It keeps my UC at bay (mostly) and it's really been a wonderful drug for me.

Mitz
Posted 7/25/2008 12:53 PM (GMT 0)
Aza does increase the risk of lymphoma. But weigh that against the increased risk of intestinal cancer from the more frequent flareups you might have if you don't take it.
Posted 7/25/2008 1:57 PM (GMT 0)
Definitely a tough call, Eva Lou. 

The Gut study is a meta-analysis of five or six other studies, which is to say it took all of these studies and combines the information to come up with its risk analysis.  I don't know the specific population off hand.  Another, older study in Gastroenterology shows an increased risk of Hodkins lymphoma.

The OP asked about cancer risk.  These are the studies that are quoted in the medical literature, nothing more, nothing less.  I have to say, though, any doctor who says that the increased risk is only associated with transplant patients is misinformed or disingenuous. 

Some recent studies claim to show a definite link between inflammation and cancer risk, but by and large the link between colonic inflammation and increased colorectal cancer risk has been suggested but not confirmed.  There are plenty of uc patients who take their maintenance meds religiously and keep their inflammation to a minimum, and they still get cancer.

 

Posted 7/25/2008 5:39 PM (GMT 0)
I've been taking Azathioprine for 6 years now and haven't had a problem except for being a little low on iron on my last visit a few months ago. now i get to take a multi-vitamin in addition to my other 13 1/2 pills a day. As long as you go in for you check-ups and blood work to be sure everything is on track. don't stress yourself out over "what ifs"


UChick
Posted 7/26/2008 6:00 AM (GMT 0)
  

     If you have cancer history in your family, I feel that you should take imuran only if it is absolutly nessesary! Make sure that your doctor is monituring you carefully during and after the use of this drug. My beloved mother took imuran for close to two years but after this drug reduced her white blood cell count to 3000 because they were too low but she felt fine. about two weeks later, she was starting to get the flu, she hardly ever got the flu! Normal white blood cell count is 8-10,000. One month after he stopped the medication she went to the emergency room at the hospital with the same flu like symptoms, we unfortunately found out that she had acute myloid luekemia. Her white blood cell count was 100,000, normal 8-10,000. Three weeks later she died. She went through painful treatments ranging from chemotherapy to bone marrow biopsies, only to live for three weeks! Her doctor who prescribe imuran never mentioned that this drug may cause cancer. I only found out this information after my mother passed away, from the cancer reseachers at the hospital. Perhaps, my mother would have reconsidered using this drug because there was cancer in her family history. I feel that the doctor should have been more cautious with mother, I called this doctor two weeks after he stopped this meication informing him that my mother was not feeling well, instead of seeing her immediately to do another blood test, he prescribes her prednison! Allowing one month to go by, knowing that this drug can cuase serious side effects like Cancer. My mother also went to the famlily doctor and they though it was the flu too, eventhough they knew she was taking imuran! Sometimes, I sadly think back that maybe my mother would have survived if she did not take this drug or if her doctors would have done something sooner! I am 24 and my mother died, she was my best friend and a good person. I hope no one will have to go through what my mother and my family went through, I miss her everyday, I will never be the same. If you have to take this drug make sure you have a great doctor you can trust. If you are on this drug and you feel something is not right do not be shy in pushing your doctor to do diagnostic tests, it could be a decision between life and death!                            

    Bfleon

Posted 7/26/2008 3:43 PM (GMT 0)

tums - I understand your concerns.  My doc was recommending azathioprene for me several months after I was diagnosed.  After talking to his nurse about it, I did some research and decided against it due to the side effects.  My little sister had skin cancer before she was 30 and I had precancerous cells in a mole that was removed over 10 years ago, not to mention that cancer seems to run in my family.  Because of my history and my family history I declined to go on it and argued w/ my doc about it that there had to be something else.  His concern was the time that I was spending on pred and he was afraid that I was steroid dependent (It took me 7 months to get off it which I know isn't good).

He ended up prescribing xifaxin which helped get me over the 20-15mg drop and on down through 10mg before stopping it.  Like many others, I watched everything I put in my mouth and didn't take a chance with anything that had a chance of bothering me even when I felt great.  I also had discovered that overdoing it caused me more problems than anything I ate so I made sure I got as much sleep as possible and took lots of naps on the weekends.  I've been off pred for 1 month now and while I had blood and a few worries after a long and busy weekend, I've gone back to keeping an eye on everything I eat and not overdoing it and things have cleared up tremendously.  I finally felt good enough to start trying things and added in metamucil last week which has solidified my bm's even more.  

I think my fear of the side effects of azathioprene and remicade (not to mention my extreme fear of needles) made me willing to do whatever it took to get off the prednisone without having to go on anything else if at all possible.  I was lucky enough that changing my diet and my ways worked for me (at least for now).  As a person that used to stress over anything and everything, I have learned to just let things go that I have no control over.  It's really amazing how much it has helped me.  Right now there are a lot of stressors in my life, but I've learned that there's a lot of things in life that we have no control over and stressing over them doesn't change things (other than to make me flare) so I just have to let them go.

I wish you luck in making the decision that is right for you.  As with many of the drugs that UCers and others take, there are positives and negatives to them and you have to make the decision that is right for you.  While there may be a higher chance of cancer with the anti-rejection meds, if you can't control your UC without them there's also a good chance of getting colon cancer and losing quality of life.  I know that there are many people on this board who can testify that the loss of quality of life that can occur makes it worth trying many different things to get the best quality of life possible so that you can enjoy life with your loved ones.

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