Share Facebook
Crohn's Disease Forum » Treatment » 5-ASA/Mesalamine » Abruptly stopping Pentasa


02-28-2014, 09:30 PM   #1
Nancye50
Senior Member
 
Join Date: Feb 2014
Location: South bend, Indiana

My Support Groups:
Abruptly stopping Pentasa

My GI had me on 4000mg Pentasa in the hospital and for the last few weeks. At my appointment yesterday, he said since I've had diarrhea, to stop it. He ordered a blood test to set the wheels in motion for Imuran.
After one round of D this morning, the 6-8times/day has stopped and...I'm getting nervous. The last thing I need is to end up constipated!
I'm recovering from a bowel perforation.
Should I have stopped so abruptly, especially at that dosage (is that high?).
The GI had actually fallen on ice, was in a wheelchair and obviously in pain. It was our first outpatient visit and I'm sure he wasn't tuned in.
I'd much rather be on Pentasa long term than Imuran. It's a less serious drug, right?
Any words of advice?
I was hoping the Augmentin was giving the the D but I guess not.


03-01-2014, 12:32 AM   #2
Jennifer
Adminstrator
 
Jennifer's Avatar
You don't have to taper off of Pentasa. If it were helping at all then you could have returning symptoms. However with Crohn's Mesalamine medications aren't the best for it because it's topical (they were created to treat UC originally) and Crohn's causes inflammation deeper in the intestinal lining than UC does so the medication won't reach. That doesn't mean it does nothing at all but will allow inflammation to continue building up which can cause more problems in the future. If you want to read more about the better treatments out there for Crohn's I suggest starting with this: http://www.crohnsforum.com/showthread.php?t=50253

Edit: I see you found that link already. Hopefully it will help some. I've been on 6MP (similar to Imuran) for well over 15 years and have never had any serious side effects from it. Mesalamine meds can be taken in combination with other therapies depending on where your disease is located. Ask them about adding Asacol if possible (if it's needed, Imuran can take up to 3 months to be at a therapeutic level).
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
03-01-2014, 07:30 AM   #3
Nancye50
Senior Member
 
Join Date: Feb 2014
Location: South bend, Indiana

My Support Groups:
Thank you Jennifer. Yes, in trying to get caught up on reading about things. I'm just scared of Imuran and trying to remind myself that Crohn's itself is something to be afraid of too. Since most of my symptoms were silent and/or cumulative, it's hard to really accept how serious this disease could be for me.
He chose Pentasa in the hospital to prevent further immunosuppression while doing abx for perforation and abscess that was beginning. I'm still on 50mg pred so that'll take a while to taper before starting Imuran too. Weird that I'm not taking anything specific to Crohns right now!


03-01-2014, 02:02 PM   #4
Jennifer
Adminstrator
 
Jennifer's Avatar
It'll take some time to taper off the 50mg but remember that it can take up to 3 months for Imuran to fully do it's thing so if possible try to make a decision before your taper is complete. Also ask your GI about 6MP/Mercaptopurine. It's very similar to Imuran yet I've heard that it's more mild.

I understand fearing going on new meds. Even Prednisone taken long term causes damage of it own and it's the one drug I hate the most (just my own personal perspective). I was afraid to start the biologics and did cry a bit because I was scared but I knew that I needed to treat the Crohn's. I started with Humira and I felt wonderful, got rid of my joint pain even within 15 days after starting it (that's just after the loading doses) however it wasn't meant to be as I continued to have recurring upper respiratory infections. If needed in the future I'd be willing to try Humira again. Remicade unfortunately caused similar recurrent infections so I needed to find an alternative again.

After trying both of those meds that I was so scared of because of possible side effects, I realized that my side effects were fairly mild compared to the horror stories I made up in my head plus the great thing about it is that I felt so much more in control with my treatment then I ever was before when taking oral medication. There were phone numbers to pharmacists I could call at anytime if I had a reaction etc and they would tell me exactly what to do. I also kept up with my blood work as well so all problems if any were caught early on without any major damage.

Imuran and 6MP also require blood work often (I have mine done monthly) to make sure that everything it doing ok. If your blood work changes then you get advance warning usually before you notice any symptoms. I've had doctors pull me off of medications in the past based off of my blood work alone.

I guess maybe all of that still sounds scary but I've been dealing with this since 1991, 23 years of ups and downs. You know your body best so if anything at all feels different, no matter how mild, let your doctor know right away. That's one of the main things I've learned and if you have a good GI they will appreciate your call and will be willing to work something out.
03-01-2014, 02:05 PM   #5
Nancye50
Senior Member
 
Join Date: Feb 2014
Location: South bend, Indiana

My Support Groups:
I'll look up Mercaptopurine. Thanks Jennifer!
He said he'd do bloodwork every three months. That's really a good point about them watching that for side effects before you feel them. That helps, thank you.


03-01-2014, 02:08 PM   #6
Jennifer
Adminstrator
 
Jennifer's Avatar
When you first start taking it you may need blood work twice a month at first. I wouldn't do blood work every 3 months until you've taken it with no issues for at least 6 months (preferably longer). This is one way we can take our treatment into our own hands by stating how often we would prefer blood work. If your GI isn't willing to do blood work more often then you can let your GP know and they should be more than happy to monitor your blood work for you every month (I've had to do this in the past).
03-01-2014, 02:11 PM   #7
Nancye50
Senior Member
 
Join Date: Feb 2014
Location: South bend, Indiana

My Support Groups:
Yeah he said more often at first. Thank you!


Reply

Crohn's Disease Forum » Treatment » 5-ASA/Mesalamine » Abruptly stopping Pentasa
Thread Tools


All times are GMT -5. The time now is 07:52 PM.
Copyright 2006-2017 Crohnsforum.com