Medication
I have been diagnosed with UC for about 2 years now. I tried a few medications in different forms the foam the enemas oral tablets and I am currently taking Mesalaizine in granual form. I went on holiday in June and forgot to take my medication I was feeling well and thought im going to see if im in remission and stay off them I’ve been fine but the last couple of weeks my stomach has been bloating bad my joint pains have been bad especially my back! Anyway I resized I felt all these pains still whilst on my medication the only thing the meds stopped was the bloody stools and rush to go to the loo. Sorry such a long winded message but I wanted to give some back ground my question is how long do you stay on ur medication do you stay on it until ur in remission and come off it ? What is the best meds to take for UC and does everyone’s pains for away on the medication there on because mine don’t I think the meds I was taking made me bloat more feel more gassy and not that great really. Any advice is much appreciated thanks
Hi
! Thank you for your question. I am sorry that you are not feeling the best right now.
I wanted to share my experience with coming off medication, which I wrote about here: https://inflammatoryboweldisease.net/living/no-shame-meds Essentially, I got very sick once I came off my medications.
Now, every person is different and every treatment plan is different too. But I do want to caution you against coming off your medication without talking to a doctor. Sometimes there can be consequences of this that we don't expect--and it's okay to stay on meds, if they are working for you. (To be honest, my doctor has told me that I will be on medication for life. It is a "maintenance drug" that will hopefully keep me feeling good.)
That being said, if you feel your medication is making you feel sick, I would recommend discussing this with your doctor. Maybe there is another medication out there that will work better!
Please keep us updated on what you decide to do. Sending <3! -Eshani (IBD Team Member)hi thank you so much for taking the time to read my questions and reply to me. so on Thursday I spoke to my IBD nurse and she has given me a 2 week course of steriods to get me back on track and also lower dose of meslazine to see if I get on better with the lower doer and if my symptoms on the drug continue to cause the side affects back pain joint pain stomach bloat etc then they are going to try me on something else. I explained to her about me stopping it and feeling like i was in remission and she said that maybe I can try reducing the amount slowly and maintaining it like that. I’m going to see how I go I’m not going to come off any medication instantly like last time because here I am now with a flare up back on steroids! I guess it’s trial and error and I need to accept that I will be on medication for the rest of my life but hoping I can get to a point where I will only need it a couple of times a week. I will keep you posted x I am really glad that you spoke to the nurse and are trying something different! Hopefully the steroids work well for you and then you can consider dropping your dosage down.
As someone who will likely be on medicine for the rest of my life, I can say that I know it feels really strange to be in that position. It took me a while to get used to the idea--I think that's why I stopped taking my medicine, after all. Now I am more comfortable with the idea because I know the meds are allowing me to live the life I want (eating well and traveling).
Of course everyone is so different, so I do hope that you end up with a treatment plan you are comfortable with and feel good on! Please keep us updated! -Eshani (IBD Team Member)
Hi
. The question of what to do about treatment when in remission can definitely be a tricky one. I can't personally speak to the issue of stopping treatment when in remission, but I found this paper on guidance for treatment withdrawal for IBD, including 5-ASA treatments, which mesalazine is considered on of. It notes that "In 2018, ECCO published guidance on treatment withdrawal in IBD, including 5-ASA. In general, it was suggested that 5-ASA treatments should not be discontinued in patients with UC, even during remission, considering their benefits for both disease control and prevention of CRC:" https://onlinelibrary.wiley.com/doi/full/10.1111/apt.15771#:~:text=In%202018%2C%20ECCO%20published%20guidance,control%20and%20prevention%20of%20CRC. It is noted that each case should be evaluated on its merits and there could be reason for withdrawal of treatment.
I also found this research paper on stopping anti-TNF treatment (which is different, but the conclusions may still be of interest) for Crohn's patients (there is no particular reason to think this would not apply to IBD in general, although only a doctor could say for sure): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8820144/#:~:text=Several%20studies%20have%20demonstrated%20a,strategy%20in%20those%20remitting%20patients. It notes that "Several studies have demonstrated a risk of relapse of CD after anti-TNF withdrawal, which varies from 20 to 50% at 1 year and from 50 to 80% beyond 5 years. These numbers clearly highlight that stopping therapy should not be a systematically proposed strategy in those remitting patients." Again, as Eshani said, each case is different and your doctor may have specific reasons for discontinuing treatment, but hopefully this research provides some insight into the history of discontinuing treatments during remission. Best, Richard (Team Member)Hi Richard thank for so much for taking the time to reply to me. I am going to check out these links now thanks again
