anyone had side effects with Asacol?

Andi · Post by **Andi** » Mon Nov 10, 2008 9:02 am

Hi. I had been on Asacol for over two months. After one month I was not noticing that it helped so my doctor upped my dose to three pills, four times a day. Within about 2 weeks I started noticing hair falling out, low grade constant headache and rapid weight gain. I am a runner and a hiker and I work out every day so weight had never been a problem. I stopped taking the Asacol and within another two weeks the headaches stopped, hair stopped falling out, and weight came off ( my diet and exercise habits did not change during the weight gain or the weight loss, the only thing that changed was a started taking Asacol, and then stopped taking it).
I wonder if anyone else has ever had similar symptoms? I am trying diet and Chinese herbs and acupuncture, i have no desire to try any more drugs.
Also, the Asacol was expensive, even with insurance it was 100 dollars a month. That is a lot of money to pay for something that did not work and that caused side effects.
One other side effect I noticed was that my face started breaking out in red pimples. Those have also gone since I stopped using Asacol. Are these symptoms common?

JJ · Post by JJ » Mon Nov 10, 2008 10:53 am

Hi Andi,

I was very allergic to Asacol. I felt nauseated and very ill....a few days later, I broke out in horrible hives..not a fun experience for sure.

TTFN...JJ

Dee · Post by **Dee** » Mon Nov 10, 2008 12:44 pm

Hi Andi,
When finally, being correctly diagnosed with MC, I was put on Asacol. I can't remember how long I was on it.
I didn't have any side effects but I did put on some weight.
BUT, after a while it stopped working and I went back to having lots of watery D.
That's when I found out that I was casein intolerant and Asacol has dairy in it, so GI put me on
Entocort.

Dee~~

CAMary · Post by **CAMary** » Mon Nov 10, 2008 3:08 pm

Andi-

I took it for nearly 2 years, and I had issues as well -at least the hair loss one! I didn't have headaches per se - but generalized achiness - like after a vigorous workout - I feel much better *not* taking it - that's for sure - though it did help my symptoms greatly...

Mary

Andi · Post by **Andi** » Mon Nov 10, 2008 3:31 pm

Thanks everyone, now I know that at least a few others have had problems.

Post by **tex** » Mon Nov 10, 2008 5:52 pm

Andi,

I find it interesting that if you look at the listed side effects for Asacol, the loss of hair, rash, acne, etc., do not appear, (at least not on the lists that I normally review. And yet, many members here have experienced those side effects, and I've noticed them mentioned frequently on other discussion boards, also, such as UC boards. I wonder it this is a side effect specific to the IBDs, or if the manufacturers are simply failing to list it.

Tex

Andi · Post by **Andi** » Tue Nov 11, 2008 3:49 am

Hi Tex,
I have wondered the same thing. It is frustrating to experience these side effects and then have my doctor tell me it could not be the Asacol. Yet i lived it, i stopped the Asacol and the side effects went away. It is too bad they would rather listen to what their training has taught them than what their actual patients who are living the experience are telling them.
Which UC boards have people posting that they have experienced the same thing with Asacol? I would be interested in reading them. I think the manufactuers are not listing all known side effects. And, after all this, my doctor does not understand why i dont want to try more drugs.
Thank you for letting me know that others have had the same problems.

JLH · Post by **JLH** » Tue Nov 11, 2008 8:27 am

My doc (endocrinologist/internal medicine) told me that I didn't have remission when I went GF! I said, oh, really then why did my GI say I could be her test patient........GI said she would rather have her patients control MC by diet and not drugs.

She then tested me for celiac disease even though I told her I didn't have it per EnteroLab. YIKES, they are so bull headed (no disrespect for your bull, Carrie.)

Post by **tex** » Tue Nov 11, 2008 9:12 am

Andi,

Most doctors prefer to believe pharmaceutical company claims, because the drug companies reward doctors with lots of great perquisites, in order to persuade the doctors to "push" certain products.

Here are some discussion threads, patient drug ratings, etc., where hair loss is mentioned as a result of using Asacol:

http://www.askapatient.com/viewrating.a ... on&order=0

http://www.healingwell.com/community/de ... 8&m=919389

Hair loss seems to be dosage related, in many cases.

http://dailystrength.org/c/Crohns_Disea ... nhair-loss

If you take herbal supplements, be aware that a few of them may carry an arsenic risk, or possibly other heavy metals, that can contribute to hair loss:

http://www.ucdmc.ucdavis.edu/welcome/fe ... index.html

Andi wrote:And, after all this, my doctor does not understand why i dont want to try more drugs.

If I made my living prescribing drugs, I, too, would probably wonder why you had such a radical attitude.

You're most welcome,
Tex

Andi · Post by **Andi** » Tue Nov 11, 2008 4:08 pm

Tex,
Thank you SO much for those links. I am going to read them right now as I am very interested in this.

harvest_table · Post by **harvest_table** » Wed Nov 12, 2008 10:16 pm

Asacol was the first med prescribed following my CC DX and it compounded my symptoms 10 fold, immediately. If I recall, I may have taken it 2 days but almost ended up in the ER.

At the time I wasn't aware of it containing lactose, and that may have been the problem for me but perhaps not in your case. Sorry your having such a rough go of it but hang in there, better days ahead!

Love,

Joanna

angy · Post by **angy** » Sat Nov 15, 2008 8:31 pm

Hi Andi!! hope u are well!!!

Within about 2 weeks I started noticing hair falling out, low grade constant headache and rapid weight gain.

I have been taking asacole for 5-6 months now!!
doc started me with 3000mg daily then after 3 months he dropped it to 2000mg.

I have been noticing some hair loss...not major but still a concern...My hair feels dry and wiry too!! using a ton of conditioner...lol!!

I also get this kind of itching on my scalp and skin...it feels like bugs are crawling over me...not all the time though..I did get a lot of headaches to start with and continue to get them but not as much. The reason i know they are side effect headaches is because they are not the same as the migraine with aura symptoms that i have experienced for 20 yrs...
My weight also fluctuates and im guessing thats a lot to do with some foods as well...even though they are all gf foods...

I have even missed a dose to see if this is causing the headaches and itching...and i sometimes feel better without the asacole...But what im wondering is!!!i get forgetful sometimes and ive never been like that...is this the meds or a symptom of cc...i know i aint got anything else..

So im thinking even though ive been taking it for 5 months...it has helped immensely with the really bad aching gut i had to start with...So im going to continue for now and put up with some of the side effects..When or if!!!they get much worse then im getting it changed!!!

Polly · Post by **Polly** » Sat Nov 15, 2008 9:27 pm

Hi Angy and Andi,

I seem to remember that CAMary mentioned some kind of shampoo that helped the hair loss from asacol. Hopefully she'll see this and jump in. If not maybe you can send her a PM.

Love,

Polly

angy · Post by **angy** » Sat Nov 15, 2008 9:35 pm

thanks polly!!!if so i may not get in uk...

Andi · Post by **Andi** » Mon Nov 17, 2008 7:53 am

Hi Angy and Polly,
I stopped taking the Asacol about a month ago and all of the side effects went away. The Asacol was not helping at all, there was no difference in how i felt. It was not worth it to keep getting side effects and not to have any relief from MC.
Tex sent me some links to other boards where people posted Asacol effects (see his post above these). Hair loss was a huge side effect for many.
The weight gain, headaches, and hair loss have all gone away since i stopped using asacol. I figure having MC is bad enough, I did not want to be fat and bald as well!!