Pentasa

Hey,

Has anyone achieved remission of Crohns disease through Pentasa?

Doesn't that stuff make you lose feeling in your hands forever?

Thats a side effect I read.

Pentasa wasn't strong enough for me. I also had really nasty side effects from it. I didn't lose feeling in my hands, but I got bad foot cramps, tachycardia, shoulder pains, the worst headaches I've ever had, and lots more. I am taking Entocort now, and I'm just about finished 2 months on it. It felt like it was helping me, but my pain seems like it has been coming back so I may be getting worse again.

I tried it but had a bad reaction to it....

I've been on pentasa for a year and 4 months, since I was diagnosed.  I was on prednisone at the beginning to help out and then entocort later for a flare, but other than that, pentasa and only pentasa has kept me in remission (knock on wood).  I am now currently 12 weeks pregnant and other than an AWFUL sinus infection with a four day fever that just broke, I am doing very well!!   And, I still have the feeling in my hands...I haven't had any side effects at all!  It is a very mild drug and it doesn't work for everyone, but I'm glad it's working for me!!  Good luck!

Hey,

i was diagnosed in november of 2008 and been on pentasa since then and it has been great for me after a week of having it i lost all the pain in my stomach, and have had no pains since. it cant be a mild medication because i have crohn's VERY severely, i had 3 absesses since november till march and had to have them all drained, and recently had a abdo operation. i am still on the pentasa and it has worked absultely great no problems at all!

Have been on Pentasa (along with Prednisone or Imuran or Entocort) for 4 years, have no side effects and seems to help, although I need something more than just Pentasa. Stopped Entocort to breastfeed our little one 10 weeks ago and feel slightly worse than during pregnancy (was on Entocort whole time as well), but not too bad, just D 3-5 times a day, but the hormones changing afret pregnancy, hard to say.

I have been on Pentaza since December 08 when I was first diagnosed. I was also on Entocourt and had been feeling great. Since you can't stay on Entocourt forever my Dr. had be come off it if after being on for 4.5 months. I have been off of my Entocourt for a week and a half now and my pain and D are starting to coming back. My Dr. is thinking of putting me on stronger meds. Pentaza is typically a more mild form of treatment. My Doc started with the least intense meds and is figuring out from there. Just remember that everyone reacts differently to all the meds. The combo of Pentaza and Entocourt worked great for me but unfortunatly we may need to find something else to keep me in remission.

I took it for about 5 years and it never helped me. As I tapered off of it my symptoms got better.

I'm not at all experienced in meds and whether they work or not    - I'm just going through that process now. Just thought I'd mention though that the doctor I saw last week wanted to prescribe with Imuran for remission maintenance - when I asked why not Pentasa/Asacol he said these were more effective on CD of colon or UC rather than small bowel/terminal ileum CD. looking through other replies and websites (yes I'm obsessed at the moment!) it certainly seems to be a lesser evil than immunosuppressants.

good luck!

Penny   

hi London Red

I'm in Wakefield and struggling to understand all the various aspects of this disease and who decides what about medication etc i should get. That's why I'm interested in the Pentasa thread - seems much more sensible than other stuff; I saw registrar last week (not consultant), ended up really upset and not another chance to get the answers for another 6 weeks. I suspect they think I am an old hand at it cos I had an emergency resection 12 years ago but I haven't been on medication or under a specialist for around 10 years so it was pretty much out of my head until recent emergency surgery - don't want to repeat the experience but equally don't want to be a slave to drugs and all the possible side effects    if not necessary.

Penny

I have been on Pentasa for 4 years. I have done incredibly well since I was diagnosed during an emergency appendectomy in apr. '05. I dropped from 2 pills (500 mg) 4x a day to 2x a day while pregnant and nursing a healthy baby girl. about a year ago, I was feeling so well and having so much trouble remembering to take the meds that I dropped to 2 pills once a day on my own. In Feb, I started having mysterious daily swelling in my right ankle that has continued until today. I also have had migratory arthritic knee pains, which I experienced prior to my first flare in 2005. Could not figure out why. Had a colonscopy last week that revealed two areas of inflammation in my colon. I had a small bowel study this morning that showed no inflammation. Prior to the small bowel exam, my GI said he wanted to put me on Remicade. THIS SCARES ME TO DEATH. I have two kids - 8 and 2- and am terrified of possibly putting myself at risk of lymphoma down the line. I asked the GI if I could up my Pentasa again and he said no. Am awaiting biopsy results of the inflammation to see how we'll proceed. Can any of you speak to remicade?