Drugs used to treat Crohn's

[hleeann]

I have a question that may seem obvious if you've been dealing with this for sometime. I have just been diagnosed with Crohn's within the last year and the first round of treatment is/was Entecort. That was helping for a while, but lately not so much. I called the doctor today and she has prescribed Imuran. Of course, I went online and read about it and some of the side effects are pretty frightening.

I've read some of the of the other posts about those who've used it, but I was wondering if anyone had a sense of how doctors prescribe meds for Crohn's. I know they want to use the least risky, but moving from Entecort to Imuran seems like a big jump (in the descriptions of the drugs and how the chances for side effects). What other drugs have you been treated with that don't have as much chance for side effects like Imuran? anything comparable?

Just curious. I haven't learned enough about the disease yet and I just want to try to be informed. Asking people who've already dealt with it seems like a good plan.

Thanks.

 

[RafHam]

In terms of immediate side effects I haven't experienced any with Imuran, and I think that this is the same with most people - although obviously there are exceptions. It is an immunosuppressive so there is an increased risk of flu and so on. You also need to have regular blood tests to keep an eye on your white blood count and liver function, but any damage in that regard won't be sudden and is reversible.

I have been told that there is an increased risk of lymphoma in the long term. Also I've been advised to stop taking it if I was trying to have children.

Lol, I started off trying to reassure you about Imuran, but looking back at the post I've probably reinforced your worries. What you have to keep in mind is that all meds have possible side effects and what you need to look at is the risk/benefit of taking anything. As far as Imuran is concerned it's just a matter of remaining vigilant and doing the tests that your doctor asks for.

And besides, the side effects for this drug are mild compared to other things that you may be prescribed. So when you say that the doctor is trying to use the least risky option, your probably right.

Just my take on it. Good luck, I hope you find something that works.

 

[jed]

just a small thing to remember, a fear that i now understand and have gotten over, these are all possible side effects.

those possible side effects have been weighed against the benefit they can do for you, and the benefit has way outscored the negative. the drug would be available if there were extremely high chances of all those side effects happening in a user.

(dont get me wrong,i read all those side effects as well and think "WOW, this is a bit scary")

my docs started from the lower scale of drugs with me, then they moved to a 3 pronged attack (pred, something and imuran). unfortunately for me, my condition was to far gone in my stomach for this to work, surgery was my only option

now i take methotrexate, has some crappy side effects like not been able to father children, but its keeping me damn healthy at the moment

 

[Guest]

hi hleeann & welcome to the forum

i know exactly what you mean about wanting to get info'd up on all the different meds & treatments for Crohn's - when mine recurred a couple of years ago after many years Crohn's-free, i was totally confused about all the meds people were on now. medication has come a long way over the years, and there are many more now than there used to be for our condition.

i've never had Imuran - so i can't comment from experience, but i do know that any reported side effect from a listed drug, even if it was just one person, has to be noted and warned about. like Jed says, the possible side effects are just that - possible.

i do worry about such things myself, i have lots of med allergies, and am always frightened about trying something new. but if i really need it, i will give it a go and look out for reactions. from what people have said in here, and other posts on the forum, i would say that your doctor is giving you a typical drug for Crohn's. i guess in your position, i'd be willing to try it and see how i get on with it.

good luck! keep us posted.

 

[My Butt Hurts]

Something else to remember is that in the test studies, people on the placebo also got cancer, so it is not the meds necessarily that caused the cancer. I have been on Imuran for 6 month so far, and have had no side effects at all from it.
I think the ASA drugs are usually the step before Imuran, like sulfasalazine, asacol, pentasa, but those only typically work for mild Crohn's I guess. Some docs use a step down approach and try to keep the disease quiet by using strong meds first, starting mild first is more of a step up approach?

 

[hleeann]

Thanks very much for taking the time to write about your experiences with these meds. I feel much better now and will take my first dose of Imuran tonight. I can tell this forum will be a wonderful support system as I go through this disease. Trying to talk with people around me who don't understand the problem and the complications that arise it is quite frustrating (though they try to be sympathetic, I guess).

Again, thanks for all the advice. I look forward to chatting more.

 

[jed]

oh hleeann,

we understand alright, we understand oh so well.

 

[johnie34]

Hi,
I have been imuran for about 3 years and just came off due to the possible side effects when conceiving a child. The doctor then prescibed Lialda in the mean time. I actually had a great experience with imuran "No complaints" I mean I felt fatigued at times but thats to be expected.

 

[TheyCallMeRC]

I have had Crohns for 15 years now and just tried Imuran in the past couple of months. It is too early to tell anything and I am still on 40mg of prednisone and so still being on Pred. it is hard to tell until I get off of it whether the Imuran is working or not.

 

[Cookie]

I took Imuran for almost a year and did not have any problems with it other than some nausea. I discovered through the advice of others here that if you take more than one pill, split them up throughout the day rather than taking them all at once to help with the nausea. My doc started me on 50mg and gradually upped my dose...he said it's like turning on hot water, you have to ease into it.

Good luck. Hope it helps you!

 

[danman]

I haven't been on imuran, Is it similar to 6-Mercaptapurin (6-MP)?
It's an immunosuppressant as well.

I was on it for 10 years.

Then Infliximab, Humira and now after an ileostomy, Pentasa.

Other drugs I've been on are the usual, Pred., Flagyl and other antibiotics.


I totally aggree with Jed, if we take the side effects literally, we would never take any drugs. When your on any immunosuppressents, you are monitored with blood tests and so on. I'd rather get a period of remission than spend my time worrying about the side effects.

 

[ErinDF]

Dan man, i think you and i are total crohns twins. I was also on 6-MP for about 10-12 years and never had a problem. I only came off of it because it stopped working. I have to be honest, I don't even really read the side-effects that my doctor doesn't warn me about...I've never had problems with any side effects and I try not to worry myself. Maybe I have too much trust in my doctor, but I figure the whole "informed consent" thing means he'll tell me about any side effects that I have to really be concerned about.

Its just the way I keep my sanity.
Erin

 

[kello82]

i was bored today and actually read one of the pamphlets that lists all the warnings and things that the pharmacy gives you with your prescription. anyways, this sentence caught my eye:
"remember: your doctor prescribed this medicine for you because he/she has judged that the benefit of it outweighs the potential risk for side effects."

to me that pretty much sums it up. if the medicine HELPS improve our symptoms and quality of life, then it is worth the risk as far as side effects.
look at it with numbers:
the med is working. so it has a 100% chance of making us feel better. the risk for a side effect is lets say 1 in 100. 1%. should we really throw away our 100% chance of feeling better for the 1% chance of side effect? then we have a 0% chance of feeling better with a 0% chance of side effects. our chance of feeling better goes down 100% while our chance of side effects only goes down 1%. not exactly equal. one definitly outweighs the other.

i really hope that made sense.....

 

[momandsonofcrohns]

Hi let me know how the immuran is working for you- my sons gi wants him to start it tomorrow and im thinking of saying no- i dont like the side affects and future things that can happen, thanks

 

[Ekspain]

Hi! I was on Imuran for a couple years, but I still had flares! Even prednisone didn't help much. I know it sounds crazy but I've been in remission now since December, and its pretty much due to Helminth therapy. I send for bottles of
TSO2500 or 1000- initially they say start with 2500. And now I feel great, and no meds!!! I highly recommend this, especially if you haven't had the disease very long. They say it works better the younger you are, or if you haven't had the disease long. Check Ovamed site- its in Germany.

 

[Joe]

I've changed doctors recently, and now on Pentasa... and let me tell you, the amount of pills I take seems like a small meal in itself.

I've also done a huge overhaul on my diet and I've been doing better, so it's hard to say if it was just the pills or also the diet. I think the diet helped...come to think of it sometimes I broke down and cheated and regreated it.