Community Forum

Hi all, 
I was diagnosed with Crohn's in April of 2011. I was prescribed Asacol for treatment. After I relocated in 2013 I had to find a new GI; my new GI informed me that Asacol is typically used to treat UC, not Crohn's. She said taking it for Crohn's is little better than taking a sugar pill. She wanted to do another colonoscopy to see for herself and try to understand why they prescribed me this medication - we were looking at a possible misdiagnosis. This spring she confirmed that I have Crohn's and although Asacol seems to be controlling my symptoms (I rarely have urgencies, no blood in stool) she says I still show inflammation and wants me to go on Imuran to put me in remission. 

I have a lot of concerns with Imuran due to the possible side effects (hair loss, lower immune system, increased likelihood of cancer). Has anyone had experience with Imuran and its side effects? 

Also, has anyone else been prescribed Asacol for Crohn's?

I have a very mild case of Crohn's. I've been told me chances of my Crohn's getting worse over time is slim to none and I have only a slightly higher risk of colon cancer compared to the average healthy person. The only time I feel symptoms is when I drink alcohol, which has gradually declined over time due to my diagnosis, and I'm okay giving up alcohol all together is it means remission and avoiding stronger medications. With this in mind, I'm not sure if it's worth taking a more severe drug.

Looking forward to your opinions and advice. 
Colleen 

 Reply posted for curranc3.

I was diagnosed with UC in the fall of 1995, and I have taken 125mg of Imuran daily for about 13 years, so both are old hat for me!

I had no luck with Asacol prior to going on Imuran,and prednisone was my go-to drug for the first few years after diagnosis, until my gastroenterologist prescribed Imuran. It has worked wonders for me and I only flare once or twice a year now.

I have never suffered any hair thinning/ loss, weird or more frequent infections, nor has there been any indication from my bimonthly blood testing that things are going wildly wrong with my liver, blood cells, etc.

That being said, over the past year or so, I have been suffering a major energy decline, foggy head, and malaise. I used to be a fairly active person (run, bike, rock climb, garden, etc), plus work as a professional forester full-time. Now I am lucky if I can convince myself to walk on the treadmill a couple of times a week. I can sleep a full night, have a two to three hour nap every single day and still not feel refreshed or energetic. It is really killing my enjoyment of life when everything I do drains my meager amount of energy so quickly.

According to the tests, my B12 and folate iron, calcium, and magnesium levels are good. My thyroid is working. My cortisol levels are good. My liver is functioning. However, my last few blood tests have been showing that my red blood cells are slowly increasing in size (macrocytosis), which usually is an indication of B12 or folate anemia, or hypothyroidism. My GP is at a loss, so I plan on seeing my gastroenterologist in the near future, just to get his opinion and if it is time to look at other drug options.

So, I don't know if all that information helps you in any way, but it is my experience to date. Imuran does work for me, and it did take a long, long time for the side effects to start kicking in. So, it might be worth discussing with your doctor further. Good luck!

 Reply posted for cvarennes.

I would recommend taking a multivitamin daily with iron and make sure to drink it with vitC. Such as orange juice. Iron and most minerals are better absorbed with vitC.

 Reply posted for brubin.

Hi! 

I saw this topic and I wanted to join in. I've been on Imuran for about 2 months and I'm noticing a dramatic hair loss. I already have thin and fragile hair. I honestly don't know what to do. I am going to see my GI tomorrow and ask him along with my dermatologist. 

If anyone know what to do to prevent further hair loss I would love any advice.

Thanks,

 Reply posted for curranc3.

Hey Colleen,

In the beginning of taking Imuran, I did notice that I was getting sick more often and it took about 2 weeks or longer to get over it. It was awful. I made sure that I constantly washed my hands and covered my mouth when people were sick (Kind of hard to do in my job b/c I work with the public) 

I haven't noticed any hair loss at all. My hairdresser is obsessed with my hair. If anything its getting thicker. I know the the risks for taking medications are a downside, but what medication isn't. Just stay positive. I've been on numerous medications and never was told that i developed anything Serious. Hopefully!!! (fingers crossed)

I have been told that my UC was Crohn's when I switched to another MD and then they said it was a UC when I switched again. Alcohol does increase more symptoms. While drinking it, stopped symptoms. It was the next morning where I had stomach pain, blood in stool and wouldn't stop going to the bathroom. Now, I don't have any blood in stool or stomach pain, However I still go after I wake up. 

My first doctor put me on Asacol and it didn't work for me and I eventually refused to take it because it wasn't doing anything and he kept putting me on it. That's when I knew I had to switch physicians. 

Feel free to e-mail personally if you wish. BonnieRubin@ymail.com