Pentasa Dosage Sensitivity

[parentnj]

My 13 year old son was diagnosed with Crohn's in October. He was flaring pretty badly and was losing weight. His GI put him on Pentasa 2 500MG 2x per day. After 2 days he developed nausea, vomiting, a fever, joint pain and cramps. We took him off the Pentasa for two days and he felt better and could at least eat again. The GI decided to re-start the pentasa a 1 500MG pill 2X a day. My son had no problem at that dosage level, but the medicine did nothing for his symptoms. We ramped him to 1 500MG 3x a day and he was OK, but once we went to 4X a day, the fever, vomiting, joint pain, etc returned. The doctor believes it was the Crohn's and not the Pentasa. He is now on a 6 week Pred treatment with 1 500MG Pentasa 2X a day which is working very well. I am concerned that once we start tapering the Pred and ramping up the Pentasa, he will have the same flu like reaction. My question is - is it common for patients to have dosage sensitivity to Pentasa? The doctor thinks my son just needs to build up a tolerance to the medicine and he will tolerate it just fine. Is that common too? Many thanks for feedback.

 

[sfmreb2]

If I take to much pentasa I start bleeding. I only take it with food. I dropped mine to 3 a day. Check with the dr and see if you can stay with the 3 a day even after stopping the pred. Some times Drs think more is better. My current GI says if it works go for it. He is only 13 yrs old and unless he is really big for his age why go for a higher dose. The adult dose is 8 500mg a day (normally). I'm not sure about the tolerance thing, sounds strange word usage to me. Pentasa side effects also include FLU like symptoms. Sometimes Drs need to read about side effects again. I do ramble a lot.

Have a Great Day.
:thumleft:

 

[upsetmom]

Hi parentnj and welcome

Sorry to hear about your son...:hug:

My 15 year old daughter is also on pentasa.
The DR started her on one tablet and increased to 5 a day.....she seems to be ok for a few weeks ...then starts getting flu like symptoms , diarrhea and pain

Why don't they start increasing the pentasa now while he's still on pred?
Then they'll know if its the pentasa or not.

Check out the parents of kids with IBD forum we have some amazing parents there

 

[parentnj]

we are going to start 3X a day this weekend since he is out of school and see how that works ... then 4x a day in January. Got our fingers crossed. He is doing very well on the pred ... his symptoms are gone but we know it is temporary and we need to find the right maintenance drugs. Thanks!

 

[upsetmom]

I hope everything stays good.

Good luck

 

[parentnj]

Update - Alec was put on 40mg of prednisone in early December and began tapering in January ... we are down to 10mg per day. Pentasa was ramped back up to 500mg 2x a day at the same time we started tapering. So far, knock wood, all symptoms are gone and he gained 30lbs. He has experienced very minor muscle pain and headaches so far from the tapering ... nothing a couple of Tylenol can't fix. We see the pediatric GI on Monday and will get his latest blood work. The Pentasa is causing him zero side effects, I just hope it is going to keep him in remission. For now we have our son back and we are taking it day by day ... I think that's all you can do. Thanks to everyone for your wisdom and feedback.

 

[parentnj]

down to 5mg of pred today, tapering has been uneventful. All his bloodwork markers and tests came back to normal ranges. Hoping Pentasa and diet can hold the gains. if not the doctor recommends either 6MP or Remicade ... something to be discussed with another Pediatric GI specialist he wants us to consult for a second opinion (that was a breath of fresh air!).

 

[Jmrogers4]

That is great news, glad the tests were good, my son just started on Pentasa today. Hoping it does the trick for him

 

[parentnj]

Jacqui - fingers crossed for you. Alec had a mini-cramp last night for like 5 seconds and of course I started asking 1000 questions ... he told me it was nothing and back off ... it probably was nothing. Appetite coming back to earth now ... to be expected but in looking back his lack of appetite preceded all other symptoms so I need to watch that. Still all good though ... and I hope Pentasa does the trick for you!

 

[Jmrogers4]

Yes, I'm always reminding myself sometimes I need to back off and they get random stomach upsets just like the rest of the world and it has nothing to do with the disease. We are still working on the appetite but hoping the pentasa, periactin and peptide drinks do the trick.
Picked him up from school the other day and he said his stomach kind of hurt, I did the same thing 1000 questions later, he said he thought it was just because he was really full

 

[parentnj]

Alec had bloody D this morning ...

 

[Jmrogers4]

Oh No parentnj, hope it is a one off. How is he feeling otherwise?

 

[parentnj]

He feels OK, stayed home from school ... had a second episode two hours later ... more bloody d. Moved him back to 5mg pred and if that doesn't work going back to 20mg. His GI is sending us to a second GI to for a consultation on 6MP or Remicade. Leaning towards Remicade as it seems to be more effective the sooner its PX'd after DX and I don't want to wait 6 months to find out 6MP isn't the answer.

 

[Jmrogers4]

We did the Imuran when he was first Dx'd along with the pred, so that the Imuran had time to reach theraputic levels, still took us a year of adjusting amounts of Imuran and adding another drug before we reached it, so remicade may be the answer for you. More of a top down approach and get it under control quickly which at their age seems like a good idea since there is so much development going on in these teenage years.

 

[parentnj]

I wish we had gone with a different maintenance med than Pentasa ... seems like we wasted 2+ months on Pred.

 

[Jmrogers4]

I don't have any problem with Pentasa as Jack is on it in addition to LDN but as a stand alone maintenance medicine, we said no right off the bat because my hubby was on it for his Crohn's and it didn't seem to be enough and when he went on Imuran it was amazing the difference he felt and symptoms he didn't feel anymore.

 

[parentnj]

The Pentasa itself isn't giving us any problems (I don't think). but it isn't enough by itself as you know. I wish we had insisted on a stronger course of treatment from the get go