Should we be off Pentasa

[bandbmom]

My son was diagnosed with Crohn's almost 3 years ago and as soon as he was diagnosed, the doctor put him on 4500 mg of Pentasa daily. He didn't seem to be getting any better, so prednisone was added and then changed to 9 mg Entocort. Then we were sent to a pediatric gastro and he added 100 mg of azathioprine. Next, we start going to another doctor because he turned 18 and he has dropped the Entocort to 6 mg, upped azathrioprine to 150 mg, and took him totally off Pentasa. His Crohn's is in the terminal ileum and he has a 12 cm stricture. I say all of that to ask - do you think it's safe for him to totally go off Pentasa? We went off on Wednesday and he got up this morning throwing up and hurting. It didn't last long, but it worried me. This doctor said that he didn't think the Pentasa was doing anything. Have any of you had experience of going off Pentasa? I'm not opposed to him going off of it because it was 9 pills per day and I just don't see him taking that many when he moves away to college. So, I would love for him to be able to stay off. I'm sorry for such a long post, but I'd love to hear from people who have "been there". Thanks!

 

[Jennifer]

I had no such reaction when I came off Asacol. It is a lot of pills. I originally took it 3 times a day but had a hard time doing that so my GI let me take 3 pills in the AM and 3 at night. It took me almost a year to notice a change in my symptoms when I finally came off Asacol. They were only minor changes though. My guess is his stricture might be starting to show its true colors. This may have happened even if he was still on Pentasa is what I'm suggesting.

Its something to inform the GI about even if it only happened one time. Random vomiting for no reason and no warning is concerning and does point to a stricture. Happened to me one day while on Asacol and 6MP. Had to go back on steroids and was another stay in the hospital (just a week I think, been so long). I just randomly started throwing up (this was before I had eaten dinner, we were getting pizza). All I remember is being in some pain, running outside to throw up in the parking lot and my mom taking me to the ER. A couple years later is when I finally got my resection because I had a stricture (I was on Asacol, 6MP, Prednisone and Entocort before my resection, it just got too bad where the meds weren't enough, they can't help scar tissue).

I guess really all I can suggest is to inform his GI and if it happens again or doesn't stop then take him to the ER. Keep us posted on how he's doing and what his GI says (no matter what happens though, he's going to be ok).

 

[Johnnysmom]

Our G.I. said Pentasa wouldn't do anything for my son. He said it was like treating a brain tumor with aspirin. (His exact words). I think the general consensus is that it would calm some very mild inflammation but doesn't actively work to suppress the immune system and might actually just cover up symptoms while letting disease continue untreated.

Hope your son finds the right combination of meds soon and is feeling better. (((((Hugs))))))))

 

[nikimazur]

I went off Pentasa with no side effects. I asked about weening off, and my doctor reassured me that there was no need to. The only change I noticed off the Pentasa, was that my hair started to grow back. Best of luck.

 

[AmandaMB]

I am on Pentasa but I fell like it does nothing for me.
Is it normal to lose your hair while taking Pentasa??? I have not heard this.

 

[Jennifer]

AmandaMB "slight hair loss" is listed as a possible side effect with Pentasa. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000880/

 

[David]

I agree that it's likely fine to go off of Pentasa as studies show it's not very affective in Crohn's Disease. But if your son continues to have problems, then having a dialogue with your GI would certainly be in order.

 

[lisakuney]

I lost about 1/3 of my hair when I started Pentasa. Luckily I had a lot of hair to begin with. It's starting to grow back in now, so I have all these little 2 inch long hairs sticking straight up between all the longer hairs that are lying down nicely