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Anyone here ONLY on Pentasa?
- Thread starter Mary
- Start date
Out of the last 7 years with a Crohn's diagnosis, I've been strictly Pentasa-only for probably ~4-5 years. I've had brief stints with steroids during acute flares (probably 3 or so times over the last 7 years), and I've had one surgery. The biggest reason for having the surgery was an abscess rather than a flare; the abscess itself got out of control because they tried to put me on steroids when my flare-like symptoms first presented!
I was on imuran for a while (primarily during the early years of CD), but that was probably because I was a pediatric patient at the time and pediatric GIs sometimes medicate the child in order to soothe the parent (lol). I'm not convinced I needed it.
You're right that everything is very case-dependent! If Pentasa works for you, make sure you stay good by following a diet that keeps the gut quiet and hopefully Pentasa is all you'll need for a long while.
I was on imuran for a while (primarily during the early years of CD), but that was probably because I was a pediatric patient at the time and pediatric GIs sometimes medicate the child in order to soothe the parent (lol). I'm not convinced I needed it.
You're right that everything is very case-dependent! If Pentasa works for you, make sure you stay good by following a diet that keeps the gut quiet and hopefully Pentasa is all you'll need for a long while.
Astra
Moderator
Hiya Mary
I was the same as Cally, only on Pentasa since dx 5 years ago, then had a massive flare back in Jan and in hospital. I've tried Aza and mercap way back in the early days but it was toxic to me, so only had Pentasa.
I'm on a short course of Pred, and once I'm off them, I'll only be taking Pentasa, I'm saving the 'big guns' til I'm half dead again in hospital!
xxxx
I was the same as Cally, only on Pentasa since dx 5 years ago, then had a massive flare back in Jan and in hospital. I've tried Aza and mercap way back in the early days but it was toxic to me, so only had Pentasa.
I'm on a short course of Pred, and once I'm off them, I'll only be taking Pentasa, I'm saving the 'big guns' til I'm half dead again in hospital!
xxxx
Hi Mary Mack,
I have been on Pentasa for probably 20 or so years. Other than Predenzone I didn't even know there were other options, until a few year ago. They scared me, so I opted to stay on Pentasa. I was labeled with mild Crohn's until my surgery last year. Tried Imuran and reacted with Pancreatitis, the doctors offered Remicade, but again it scared the crap out of me. So I am back on Pentasa until my gut shows it is degenerating. So far so good, I am following the SCD diet as much as I can. Can't say I haven't run into some problems, but I'm with ASTRA,"I'm saving the 'big guns' til I'm half dead again in hospital". I hope the best for you.
Pam
I have been on Pentasa for probably 20 or so years. Other than Predenzone I didn't even know there were other options, until a few year ago. They scared me, so I opted to stay on Pentasa. I was labeled with mild Crohn's until my surgery last year. Tried Imuran and reacted with Pancreatitis, the doctors offered Remicade, but again it scared the crap out of me. So I am back on Pentasa until my gut shows it is degenerating. So far so good, I am following the SCD diet as much as I can. Can't say I haven't run into some problems, but I'm with ASTRA,"I'm saving the 'big guns' til I'm half dead again in hospital". I hope the best for you.
Pam
Hi.......Ive been taking Pentasa for a good 9 years......tried asacol and it did nothing......I have had Imuran at times also and pred but none of them prevented me having resection surgery. I had my surgery 4 years ago but only had my stoma removed two years ago......since then I have only been taking pentasa and my crohns is really bad again. Im hoping to try Humira now............good to see things are going ok for you though. Just because it hasnt worked for some, doesnt mean it wont work for you.
Ruth
Ruth