Pentasa dosage sensitivity

[parentnj]

Hi all, my 13 yr old son was diagnosed with Crohn's in November. He was having pretty severe symptoms and was losing weight rapidly. His GI put him on Pentasa 500MG 2 pills 2X a day. Within two days he was experiencing fever, nausea, vomiting, joint pain and muscle cramps. We backed him down to 2 pills a day and he felt better but the medicine was not improving his crohn's symptoms. We went to 3 pills a day and no problem, then back to 4 and the fever, nausea etc came back. We went back to 2 pills a day and started prednisone. Within a week he was almost symptom free and eating like a horse. We are going to taper off the pred in a couple of weeks. The doctor believes my son just needs to build up a tolerance to Pentasa and he will be fine. I have not read anything about building up a tolerance to Pentasa ... just that some patients have acute intolerance to the drug. Does anyone else have any experience with Pentasa dosage levels and side effects as dosage increases? Many thanks for you help and advice!

 

[Clash]

I don't have any experience with pentasa but have you checked in the 5ASA/Mesalamine(<---click here) forum to see if any similar threads have been posted?

Also it seems that it is only the prednisone keeping his illness at bay and the pentasa isn't effective for him. You may also want to check this thread(<---click here) out as it deals with studies of 5ASA/meslamine and the treatment of CD.

Lastly, please visit our parents forum (<---click here) as there are some wonderfully knowledgeable members there.

I hope your son finds relief soon and you are able to find some answers to your questions.

 

[kiny]

Don't want to say you are wrong, but I doubt pentasa is causing fevers, vomiting and joint pain, I also have a hard time believing that going from 4 to 3 pills would clear these things up if they were caused by pentasa. It just seems really really far fetched to me, pentasa is relatively safe and has very low potency and bioavailability, a lot of the side effect people attribute to pentasa have nothing to do with pentasa.

Maybe I am totally wrong, but how do you know it is the pentasa?

The fevers people get on crohn's disease are usually attributed to crohn's disease, because the immune system is also a temperature regulator, same thing is seen in TB, the fevers are not caused by any drugs TB patients are on, but by the immune system.

It's pretty normal that the fevers disappear after you start prednisone too, it's suppressing the immune system, which is what is usually behind the fevers.

As far as your doctor, I have been on pentasa for years, it never caused issues. I think what is more likely is that your doctor doubts these things are caused by pentasa too. I'd be more worried about prednisone than pentasa, prednisone is hundreds time more powerful than pentasa.

 

[parentnj]

thank you for your feedback. we don't know for sure it is the pentasa but if he has acute intolerance to the drug then the symptoms he is showing are consistent with that situation. We hope it is not pentasa since it is the easiest drug and least prone to serious side effects. We are going to try and up the dosage again to see how my son responds now that the pred has knocked down the crohn's symptoms. thank you!

 

[parentnj]

and actually we went from 4 pills to stopping altogether for 2 days and his fever, etc cleared up. then we went back to 2 pills a day. thanks!

 

[my little penguin]

I am with kiny.
His symptoms are classic crohn's flare called extra intestinal manifestations(EIM )
My son gets them when his meds are wearing off ( remicade infusion) or when he would wean pred . Ibd waxes and wanes a lot in the beginning so you could be good for a while then miserable then good again no rhyme or reason.
Pentasa did nothing for DS after a month he was no better .
Once You start to wean pred then you will have your answer.
Please talk to your Gi if your child is still exp symptoms or EIM after a month pred free on pentasa.

 

[parentnj]

MLP - thank you for sharing your experience with us ... my wife and I feel overwhelmed sometimes at the treatment choices and side effects and we can't tell what's a side effect and what is the disease. I really appreciate you taking the time to share.

 

[Sascot]

Hi, sorry to hear about your son. I don't have any experience with the Pentasa, but if you are really concerned, it would be worth asking if the medication could be changed, then you would know whether it is the meds or not. My son did the 8 weeks EN liquid diet which took away all his symptoms for a good few months. We will be starting 6mp after the Christmas holidays, so hoping not too many side effects!

 

[jessie_carol]

I did need to get used to Pentasa when I started taking it in September. I wasn't getting fevers or any new joint pain but I was nauseous, had no appetite, extra fatigued and was getting headaches for a few weeks. But it helped with my symptoms and after a few weeks those side effects went away. My GI was really only concerned with me getting pancreatitis from the Pentasa. She said that anyone can get it randomly from the drug and it doesn't matter how high of a dosage you are on.

 

[muppet]

Pentasa CAN make Crohn's symptoms more severe in some patients. I'm not sure about fever and vomiting but it can certainly exacerbate inflammation and bleeding which might indirectly cause more EIMs. If your son is able to tolerate 3 pills a day, though, then I doubt Pentasa is the culprit.

I had to build up a tolerance to colazal (now on Lialda) at first, but it was due to an allergy of some kind. I went to an allergist and we ramped up my dose a little at a time and eventually my excema and exacerbation of my asthma went away.

I wish someone had thought of that when I was a kid because asulfasalazine used to make me look (and feel) like a leper.

 

[izzi'smom]

I wanted to say hello and welcome!
We didn't have any of these issues with Pentasa, although it didn't work for us (and I second the thought that Pentasa can exacerbate Crohns symptoms). Glad to hear that Pred is working for you, however, and hoping your taper is uneventful.
I was under the impression that Pentasa takes 2-3 months to become fully effective, though,,,if it IS going to work I would guess that it is a bit early to tell?
(I'm not trying to be negative, but we did the Pred taper over and over again once upon a time )
At any rate, best of luck and keep us posted!!