Octasa / Mesalazine - Should I be seeing more of a change?

[VV_1990]

Hello. I have struggled with symptoms for 2 years - loose, frequent bowels, always with urgency, fatigue, etc. Had colonoscopy and relevant tests and doctor says that I likely have crohns and is treating me as such. I had steroids for 3 months which generally helped (though my calprotectin was higher after the course) and I started Octasa 800mg (6 a day) about 2 months ago.

Generally my symptoms are lesser, as in less frequent, however I still get urgency, sometimes I am still going up 4-6 times a day, and they are always very loose. I would say I have a balanced diet. I’m keeping a record of what I am experiencing to share with my dr. My question is, after 2 months of Octasa, should my bowels have improved more than this by now? Should they be more like a ‘normal’ situation - couple of times a day, firmer? I don’t know what I was expecting but I guess maybe more of a change.. If anyone has been on these meds and is able to share their experience, I’d really appreciate hearing it. And if they were the same as me, what did they do? Thank you in advance!

[Sunligh7]

I’ve been on Octasa since 2020 when I was admitted to hospital with a flare up. I have ulcerative colitis.Ive never really got on with these drugs as I’m sure they give me reflux and headaches. They seemed to quiten the disease down after 3 months x 6 a day but once reduced I had episodes of flare up and had to have suppositories.

Years ago I was on azathaprine for 10 years and also infliximab infusions. My disease was more controlled with these

I’m now having another flare up and want to come off these and try another medication or injection. I’m on steroids at the mo plus octasa. Seeing consultant next week.

Additional things I’ve found helpful are aloe Vera juice , low residue diet, no alchohol, no spicy food, limited dairy , plenty of water. Also meditation, reiki and rest.

I would have a chat with IBD nurse about how long usually takes before seeing a massive change. Also it may be you need to try a different treatment.

Hope things start to significantly improve 🤗

[VV_1990 in reply to Sunligh7]

Thank you so much for your reply, I appreciate it. I hope your flare is under control soon 😓 I have an appt with my consultant on 14th feb so going to keep on with Octasa as directed, but I don’t think it’s working the way I hoped it would. I’ll let them know my experience and perhaps I’ll try something else to see if any better. Wishing all the best with your treatment!

[Valbaty54]

Octasa and other similar mesalazine drugs are first line or maintenance treatments which are anti-inflammatory. I was on these but they were not strong enough to suppress my symptoms and make a difference. The next step is things like steroids and azathioprine which are immunosuppressants, and then after that biologic treatments which are injected or infused. It sounds as though you need something a little stronger! Keeping notes is a good idea so maybe give it another month then get in touch with your IBD nurse if you have one or your Gastro consultant. Good luck!

[VV_1990 in reply to Valbaty54]

Thank you so much for your reply, I really appreciate it. I was initially on steroids and now Octasa but I think you’re right, I’m not sure it is strong enough. I have an appt on 14th feb so perhaps I’ll see if I could try something else to see if any better. Thank you!

[Maisywhippet]

I take a maintenance dose of 1200 mg octasa night and morning for UC ….which works really well,if I ever feel things are going down hill then I up the dose to 240mg twice a day for a few days…this works fine for me. Good luck.

[VV_1990 in reply to Maisywhippet]

thank you for your reply and sharing your experience. I suppose we are all so different and it’s about finding the best thing for our bodies. I have an appointment on 14/2 so I’ll discuss options with consultant. Thank you!