Side Effects?

TooManyHats · Post by **TooManyHats** » Thu Mar 03, 2011 5:28 pm

I've been having stomach pain, nauseousness, gas, and a headache for the last 2 days. I know this is listed as side effects for Asacol, but I wonder about the lactose monohydrate in the in-active ingredient list. How long do you wait until before you call the doctor? Or should I be giving this more time to work itself out?

Joefnh · Post by **Joefnh** » Thu Mar 03, 2011 5:54 pm

Arlene I am not familiar with asacol, but if the symptoms have been constantly present for 2 days I would call the doctor, especially with a weekend coming up.

Post by **tex** » Thu Mar 03, 2011 8:01 pm

I agree. Many of us can't tolerate Asacol.

Tex

connie · Post by **connie** » Thu Mar 03, 2011 11:56 pm

Hi Arlene,
I am sorry to hear you are having so many ill effects. I had stomach pain with Asacol. The pain was awful and it stopped as soon as I quit taking the Asacol.

We are all different in what works but I have tolerated Pentasa very well, unfortunately it is as expensive as the other meds. I wonder if you could get samples from your doctor if you have to change medicines again?
I hope you will find relief soon. Hang in there, I will be thinking of you.
Connie

TooManyHats · Post by **TooManyHats** » Fri Mar 04, 2011 7:11 am

Thank you Connie. I'm definitely calling the doctor today. To top everything off, the D is back.

TooManyHats · Post by **TooManyHats** » Sat Mar 05, 2011 6:59 pm

I am now passing the pills whole into the toilet. I am beyond disgusted. I just need a break.

Joefnh · Post by **Joefnh** » Sat Mar 05, 2011 7:39 pm

Hi Arlene, I am sorry you are having a tough time. I have read that several members have had a rough time with the Asacol. I do not remember if you have tried Entocort yet but that seems to be another good med for treating MC if you can tolerate it.

I hope you feel better soon

--Joe

ant · Post by **ant** » Sat Mar 05, 2011 8:11 pm

Dear Arlene

Sorry you are having a such a bad time of it. Were you able to get through to your doctor?

Best wishes and hope the D calms down soon, ant

MaggieRedwings · Post by **MaggieRedwings** » Mon Mar 07, 2011 6:33 am

Morning Arlene,

Were you able to get through to your doctor? I agree with posters before me that some people have a very rough time on Asacol but then you can never tell with a drug. Passed them whole the majority of the time I took Asacol which did nothing for me.

Hope you are feeling a bit better.

Love, Maggie

TooManyHats · Post by **TooManyHats** » Mon Mar 07, 2011 8:57 am

Thank you. She'll be calling me back today after 1:00 pm.

TooManyHats · Post by **TooManyHats** » Mon Mar 07, 2011 2:40 pm

connie wrote:Hi Arlene,
I am sorry to hear you are having so many ill effects. I had stomach pain with Asacol. The pain was awful and it stopped as soon as I quit taking the Asacol.

We are all different in what works but I have tolerated Pentasa very well, unfortunately it is as expensive as the other meds. I wonder if you could get samples from your doctor if you have to change medicines again?
I hope you will find relief soon. Hang in there, I will be thinking of you.
Connie

I wanted to thank you for helping me stand my ground with the doctor today. Her feeling was that the amount of Lactose in Asacol would not cause me a problem. It was the fact that I could say that I knew someone who didn't do well on Asacol, but did on Pentasa was what ultimately got her to switch the medication for me.

She wanted me to come into the office because she felt something else was wrong besides me reacting to the small amount of lactose in the Asacol. My thought was, I'd seen that merry-go-round and had no desire to hop on.

I honestly don't understand the stubborness with this doctor. What amount of lactose would be good and/or tolerable for a person who has been lactose intolerant for 15 years and who's colon is already inflamed(If there's lactose, wouldn't there be casein in it too)? I'm thinking none. I've even cut butter out of my diet because of the casein in it.

She did tell me to be prepared to have to pay for it completely out of pocket because she has trouble getting it covered by insurance.

JLH · Post by **JLH** » Mon Mar 07, 2011 4:28 pm

I had a very difficult time with my doctor at first but she finally came around. I took her copies of important posts from this board.

Also, she knew that I wasn't taking either the Entocort or Lialda that she was going to prescribe before I found the PP and went gluten free.

TooManyHats · Post by **TooManyHats** » Mon Mar 07, 2011 5:20 pm

I've been gluten, dairy and soy free for 2 months. I've been eating basically chicken and rice for the last month. Still no luck. Apparently, I need more help.

connie · Post by **connie** » Mon Mar 07, 2011 7:31 pm

Arlene,
I could not convince my first GI doc that it was the Asacol that was causing my stomach pain, he insisted that I had to stay on it. I had to switch doctors. Finally doctor number three prescribed the Pentasa. Finding the right medication can be quite an exercise of trial and error.

For what it's worth, my current GI doc told me that Pentasa seems to have the least side effects of the mesalamine drugs. It seems to me that there was another member on the board approximately a year ago that was taking just Pentasa.

In Joe's post he asked if you had tried Entocort. Has that option been explored? I could not tolerate Entocort at 9 mgs per day but I could tolerate it at 3 mgs per day, so I ended up on one Entocort per day plus the Pentasa. I realized after I posted that I had not included the 3 mg Entocort dose, which left me feeling very bad. Entocort (budesonide) can be ordered through a Canadian pharmacy at a much better price.

I feel your pain, until I got some relief from my symptoms I was wondering if I would ever have a good day again, but there will be good days. Hope you feel better soon. :bigbighug:

Connie

Post by **tex** » Mon Mar 07, 2011 7:39 pm

Arlene,

Believe it or not, research shows that most people in the general population who are lactose intolerant, can tolerate up to at least 8 ounces of milk, (or the equivalent in other sources of lactose), without showing any symptoms. However, that does not seem to apply to people with IBDs. The problem is that doctors have no way of knowing that, so that's why so many of them are confused about prescribing Asacol.

Furthermore, pharmaceutical grade lactose is supposed to be 100% pure. Since so many of us on this board react to Asacol, that sort of suggests that some/many/most manufacturers of pharmaceutical products may be using industrial grade lactose, instead of pharmaceutical grade. Otherwise, your doctor is correct - we shouldn't react to such a small amount of lactose, so obviously, "something is rotten in Denmark". Our experience suggests that it may indeed contain at least traces of casein, or possibly some other undeclared food or drug sensitivity.

Tex