Disappointed/stressed

[S-ved]

9 days into taking Pentasa (alongside budesonide 3mg) in an attempt to stop taking budesonide and I experienced side effects of the pentasa. Feeling sick, no appetite, bloating, burping, chills/hot sweats and the worst diarrhoea.

I’ve decided to stop taking it and continue with the 3mg budesonide for now until my next consultation.

This has been a stressful and upsetting reminder of how I was feeling before I was diagnosed with Collagenous Collitis.

I can’t wait for this stuff to get out of my system and hope that the budesonide will settle things down again soon. Will 3mg do it or should I take 6mg? Anybody had similar experiences?

Sorry for the negative post but feeling so disappointed

[Hephzi]

Gutted that pentasa hasn’t worked for you. ☹️ No experience of this so can’t advise unfortunately. When I stopped salofalk because of side effects I went straight onto 9mg budesonide as it was the first treatment not maintenance.

[S-ved in reply to Hephzi]

Thanks for your reply. How are you doing at the moment? I’m going to email consultant if no better by Friday as the 3mg doesn’t seem to be cutting it. I really need advice on this as not sure whether the pentasa would still be present or if I just need a bit more help from budesonide.

Hope you’re ok

[Hephzi in reply to S-ved]

I think that’s a good idea. Best get some medical advice on dosage. I am ok thanks. Mixed days at the moment. Not bad enough to go back to consultant yet thankfully.

[S-ved]

That’s better than it could be and I’m pleased for you. 🙂

[ladymoyock]

I tried Pentasa once also and had vomiting with it. Had to come off and added it to my allergy list. That was almost 30 years ago. I had gone on Stelara about 10 years ago and it helped tremendously. I’m now in remission so don’t ever give up. Budesonide is a good, inexpensive anti inflammatory for us when we need it. I hope you feel better soon.

[S-ved in reply to ladymoyock]

Hi and thanks for our reply.

I know Pentasa does work for some and was hoping I would be one of the lucky ones but unfortunately it’s not for me.

Stelera is one I’ve not heard of so will look this up. Thanks for sharing that.

Congratulations on your remission, it’s so good to hear about success stories, it does give me hope.

I won’t give up, you can’t, you have to keep trying these things if they’re offered to you I suppose.

I’m speaking to my Consultant in May so will be staying on the budesonide until then at least.

Thank you for your good wishes, I hope I feel better soon too.

[jakelayla in reply to S-ved]

Sorry you are going through a rough time. When I had my colonoscopy I was misdiagnosed, the Dr believed I had Crohns and I was prescribed Salofalk. The side affects were so serious I ended up in hospital for three days on a drip. They received biopsy report during my stay and confirmed I had CC. The consultant told me Salofalk caused the adverse affects and put me straight on 9mg Budesonide, which is the correct treatment for CC. You are right to stop taking Pentasa if it is causing severe side affects. This condition can get nasty very quickly. Good luck, hope you feel better taking Budesonide.

[S-ved in reply to jakelayla]

Hi and thanks for your response. My goodness that sounds awful. I’m so sorry you had to go through that. These drugs obvious work in some cases but when it doesn’t it’s such a horrible experience.I had been taking it for over a week and was fine then overnight I felt awful, the symptoms were as bad as before I was diagnosed, it was really upsetting. It certainly does take hold quickly.

I have done the 9mg/6mg and now 3mg budesonide as I’m at the end of the initial course. I’m continuing with the 3mg budesonide until I speak to my consultant and see where we go from there.

I’m hoping that budesonide will sort out this problem now that I’ve stopped taking the pentasa, I suppose it will take time to come out of my system.

How are you dealing with CC now or are you lucky enough to be in remission?

[jakelayla in reply to S-ved]

Hi there S-ved, I have mostly learnt to live with this condition now. If things get too bad I rely on Budesonide. I was diagnosed later in life and I'm so grateful for that. It must be so hard for young people living with this condition. Hopefully 3mg Budesonide will get you back into remission.

[S-ved in reply to jakelayla]

Thank you. It was stressful dealing with this and trying to work too but luckily I have an understanding boss and we mostly work from home now since the pandemic.Budesonide is the drug of kings in our situation and yes I think it’s starting to get me back on track.

Take care and wishing you good health

[Knip]

I was just about to post about Pentasa. Following a bad flare of Chron's Colitis at Christmas which had me in hospital, I was taking Budesonide, but weaning off it slowly, as well as Pentasa. I just wasn't getting better and still had very urgent, squidgy, motions. During a Telephone Consultant I asked if it might be the Pentasa...and he replied that it might be. It was decided that I should try stopping it (I'm on Methotrexate for Rheumatoid Arthritis anyway, which is a treatment for Chron's) and here I am just one week on feeling so much better! I was about to ask if anyone else had experienced the same thing.

[S-ved in reply to Knip]

Hi, thanks for your response. It seems that it doesn’t agree with some people for whatever reason I don’t know, I’m no doctor 😄. I have Collagenous Collitis.

I was also trying to wean off the budesonide by taking Pentasa but wish I’d never been given it. I felt ill like before I had been diagnosed, it was a horrible experience. I was hoping that this would help but sadly it’s not the case.

How are you finding the budesonide, does it work well for you? I am starting to feel better today after being off Pentasa for 4 days now but still not feeling 100% but if your feeling better after a week then maybe the end is in sight for me.

Glad you’re feeling better anyway 🙂

[Knip in reply to S-ved]

I'm finding the Budesonide is helping me S-ved, and it has been suggested I stay on it longterm but I'm concerned about that because I have osteopenia...the forerunner of osteoporosis...and steroids can weaken bones. It's a catch twenty two! I hope that things continue to settle down for you as have for me. Take care and I truly hope that you will be feeling better soon.

[S-ved in reply to Knip]

Has it ever been suggested that you take budesonide every other day, or whether it’s effective? Long term budesonide does have its drawbacks. I can understand your concerns.

I hope you are able to make a decision that you’re happy with.

[Knip in reply to S-ved]

No, S-ved, that hasn't been suggested but it is definitely worth considering. I need to do a bit more research, I think, and perhaps discuss with my GP. Thank you for you reply. This site is so valuable in the way that we can share info and ideas. Take care,