HealingWell
Search Close Search
☰

Reaction to Pentasa? Your experiences?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/24/2013 5:20 PM (GMT 0)
 

I would appreciate hearing from those of you who reacted negatively to Pentasa (diarrhea, vomiting). 

Doctor added Pentasa last night to see if it would boost his response to Remicade (Remi response has been moderate, not stellar), and he has had vomiting and diarrhea (he had been down to 5-7 partially formed bm per day prior to starting Pentasa yesterday - this was progress for us).

My question is how soon after withdrawing the Pentasa did you see symptom relief?  Just needing some reassurance that he can recover from this and won't back slide as a result.  Thank you!

Posted 2/24/2013 5:54 PM (GMT 0)
My doctor changed me to Pentasa from Mezavant (don't know why) and after takeing it for a week everything was getting worse with increased urgency and frequency and bloody mucous etc. My flare was only a mild one but Pentasa certainly made it worse. I went back to Mezavant and in two to three days everything settled down.
I had the same reaction to Pentasa suppositories when I was first diagnosed a year ago and changed to asacol.

I will never touch the stuff again. The IBD Nurse said it was a brand thing and some people react to the other ingredients in the tablets/suppositories.

Ask for a different bran.
Posted 2/24/2013 5:56 PM (GMT 0)
Has he had only one dose? I would think in a day or two he should have it out of his system.
Posted 2/24/2013 6:19 PM (GMT 0)
Mad Martha - I saw your thread - thanks! Glad you are getting relief from the Mezavant. I am fearful of trying another brand after this, but maybe....

sherbear46 - Yes, only one dose, so you are probably right. Thank you!
Posted 2/24/2013 10:50 PM (GMT 0)
My daughter tried several different 5ASA's and was intolerant to all of them confused
It was such a bummer not to be able to use this level of medication but it made her symptoms worse very quickly.
It seems that many with UC are unable to tolerate the mesalamines .

Hope your son gets it out of his system quickly!
Posted 2/24/2013 10:56 PM (GMT 0)
Thanks, IBDISTHEPITS. Yes, it is frustrating when he appears to not even tolerate the very drug that people we know in real life take to stay in remission. My biggest fear is that we lose ground in his status now. But I am hopeful he will get back to where he was, once the Pentasa is out of his system. He only took one dose. Did your daughter rebound ok right away after her reactions?
Posted 2/25/2013 12:49 AM (GMT 0)
Yes- he should get better very quickly if it was just the pentasa that set him back.

So sorry it did not work for him.

Has he tried Hydrocortisone enemas yet? They could be helpful- of course it may be tough to get hime to do them but

I use them with my daughter 1-2 times a day if/as needed and they do help.

What are his main symtpoms right this moment?

Gosh- you huys deserve a break asap...

Does GI know he did not tolerate the Pentasa? Do you think you might try a different 5-ASA?

We tried Pentasa, Sulfasalazine and Colazol also Rowasa enemas- none of it worked amd she

reacted very quickly to all but the Pentasa- she was on that abit longer but was not getting better

but getting worse.

How is your son today?

Posted 2/25/2013 1:27 AM (GMT 0)
Thanks, IBDISTHEPITS.  That is reassuring.  We have worked long and hard to get to this point and I feared we'd lost it all, you know!?  Before this current little Pentasa setback he had been averaging 8-10 bm per day, night waking to use restroom, cramping, no energy, urgency, etc.  Then the Diflucan gave us a little boost the last couple of weeks and he felt better than he had felt in two months!  That was just this week, and he got down to 5-7 per day, woohoo, and seemed to be still getting even better - so that's where he was at yesterday and then we added the Pentasa.

Tonight he is a little better and regaining a bit of an appetite so I think you are right that he will come out of this real soon.

We have not done the enema but he is willing to do anything. For some reason our dr didn't think they'd help due to the extent (pancolitis) but worth a try, right?!

We will call our GI tomorrow and find out whether trying another is recommended.  I am not to excited about the prospect now, honestly and I see it didn't work for you either.

Posted 2/25/2013 5:38 AM (GMT 0)
Formyson,
Please do try the hydrocortisone enemas...it really is risk free and can really help.
Don't let your Dr say it won't work because of the extent of having pancolitis,it can help!
Remember it is important to treat from both ends!!
You can also start by using them 2 times a day...before bed and in the am.
My 12 yr old can hold it all night so he will be fine.
Please give it a try at least!!
I am rooting for you...does Killcolitis have your email address?
I can ask her for it and we can communicate more if you like :)

Looking forward to hearing that your GI gave you the script and you can get started!!
Posted 2/25/2013 7:30 AM (GMT 0)
try Dipentum(Olsalazin), ask your DR. about it.

Post Edited (Lamoshka) : 2/25/2013 12:33:47 AM (GMT-7)

Posted 2/25/2013 7:49 AM (GMT 0)
I'm severely allergic to 5ASA's, after just one dose of 4 Asacol, I broke out in a full body rash, nausea, fever with chills, horrible headache and majorly lethargic. I told my GI (first GI I ever had since this was right at the beginning of me getting sick) and he seemed so pissed off at me for being allergic to it...he was an ass and I dumped him shortly after.
Posted 2/25/2013 2:10 PM (GMT 0)
IBDISTHEPITS - You've sold me - We will ask for an Rx, thanks! Yes, Killcolitis has my email - she has been very helpful and supportive - we are only diagnosed since October, so are learning as fast as we can. I would love to hear from you, thank you! :-)

Lamoshka - I will look into that one. Thanks!

pb4 - wow, sorry about that terrible dr experience! Thank you for your reply - that sounds like a bad reaction.
Posted 2/25/2013 3:23 PM (GMT 0)
Did you get on the facebook page for parents of kids with IBD? There is also one for alternative treatments.

Definately try the enemas. It was the last thing we added into the mix as far as medications and then my son finally went into remission. Doctors are strange about enemas. I had to practically beg our first doctor to let us try them. The second doctor (the one we have now) wanted my son to go off the enemas after only being in remission for 3 months. I told her no way, these enemas really work for him. Thankfully this doctor actually listens to me.

When my son first started enemas, I could see a difference in his symptoms in about 3 days but I think it can take longer (a few weeks) for others to see improvement.

I saw your question asking me what we did for diet. I tried SCD and it didn't work for my son. He had his first flare while on all the meds in my signature except for the enemas. We were also doing the SCD at the time. Now we just try to minimize the amount of processed food we all eat. I try to do more Paleo meals but he also eats potatoes and rice.
Posted 2/25/2013 4:12 PM (GMT 0)
Susan451, thank you! We are looking into the enemas today. DH is a pharmacist (teaches at university) so he just wants to know more about the steroid absorption before moving forward and asking for the RX, but we are ready to do so. You all have given us much hope about that, thank you! We feel we are getting closer and closer so I am so glad to hear that is what put your son over the edge into remission. How incredibly relieved you must have been!!

Killcolitis sent me the links and I signed up for the FB pages yesterday. I am not usually on FB at all so it will take me a while to figure things out, but I did start to read. Did not get the invite returned from the alternative tx page yet, though.

Good to know about your diet. My son cannot do SCD either. We are doing some things with the FODMAP as I saw a correlation in what he tolerates, as well as anti yeast, but he also eats a small amount of potato and rice to round things out. Definitely low sugar though. He really feels better with a little gluten free grain in his diet - so we are likely doing similar to you with diet. We also cant afford to lose any more weight.

Thanks so much everyone for your replies! We are working hard at this and appreciate your help. Best wishes to all.
✚ New Topic ✚ Reply