Mesamalmine

I need help and opinions. I have ulcerative proctitis and colitis and i have tried lialda and apriso. Both tines i had a flare particularly with my proctitis. My dr says my body doesnt not do well with mesamalmine so my next option is humire or something similar. I am afraid to dobthose because of the cancer risk. Has anyone else had problems with mesamalmine? And if so what are they taking now?

Im currently on cansa it seems to help but im not sure if i can stay on them daily. I assume if i could the dr woyld have me do that.

Right now i am on it twice a day. I was in apriso but was told to stop it since it seemed to bring on my flare.

you can try another oral mesalamine. if it too increases symptoms, you will need a stronger med unless you can find a combinations of anti-inflammatory food, supplements, and probiotics.

the oral mesalamine is more topical than systemic, but it is more systemic than suppositories. still since you tolerate mesalamine suppositories, there is a reasonable chance you might find an oral mesalamine since you do not seem to be alergic.

the cancer risk of biologics is generally considered lower than the cancer risk of untreated chronic inflammation. you can try the immune-suppressant type first, but today many people go direct to biologics. some research has found that biologics quicker was better in cases of pediatric IBD, but I have not seen studies in adults.

there is no having ulcerative proctitis and ulcerative colitis. when it is in more then the procto-sigmoid area it is just called uclerative colitis. if you only treat the rectum and procto-sigmoid, any inflammation in the rest of you colon goes untreated, and with each year of untreated inflammation, your colon cancer risk gets higher.

good luck

Are you seeing a gasteroenterologist?

First odd thing, the term Remission is never used when you're on a steroid like uceris. Remission is always steroid-free.

Second odd thing, stopping canasa. If you have ulcerative proctitis (a chronic, lifelong condition) then you should be on a maintenance medication, as stopping them only makes your symptoms return as you found out. It sounds like they were treating you for infectious-proctitis, take this for a while and then stop and you'll be fine.

Third odd thing, stopping lialda and going to uceris. Ideally you should be simultaneously on both an oral mesalamine like lialda and a rectal-route mesalamine like canasa suppository.

Really, you should be on all of the following: an oral and rectal-route mesalamine and add a steroid if not responding. The steroid is temporary while the other meds work.

Yes balsalazide is a type of mesalamine anti-inflammatory medication, like lialda. Technically it's a more complex molecule that your gut bacteria cleave into mesalamine and a byproduct, but that's just a mechanism of delivery.

I was on lialda for a few moth while on the uceris but was still getting a flare up. They said that it was the lialda that was causing this and that i needed to get off of it.

So are you saying i can do like canasa and balsalazide or balsalazide and the mesamalmine enemas?

A mesalamine allergy (less than 5 percent of patients) is the only reason to discontinue. It's described as. Dramatic worsening of your symptoms, like going from 2 firm bms a day with little urgency to 6-8 bms that are very loose and crazy urgent; very dramatic. Unless you've experienced that then you're not allergic or intolerant.

I was lialda for about 3 months and apriso for one month. Could certain foods cause flare ups? My dr says no but i heard from someone else that their dr said yes.

For some food matters...it is individual. Diet doesn't help me specifically (although I can't eat hummus..how about that for strange) I would try elimination diet to see if you are affected...biggies...dairy, gluten, sugar. I'm sure some of the diet guys can give you more guidance. As far as rectal pressure, my thought is the proctitis. The Rowasa/Canasa used more regularly for a while should hopefully deal with this. You can always add in a steroid supp or foam if necessary to jump start things. Also you can try fiber supps such as Metamucil (added in slowly) along with a good quality probiotic.
B

I'm mesalamine intolerant and it took my doctors a year and a half of forcing me to try and fail on every mesalamine drug out there before we moved on to Imuran. The thing that finally convinced me: I was having scopes that showed only mild proctitis and was running to the bathroom 30+ times and day and throwing up at night. My doctors kept insisting it might be IBS complicating my UC, but I don't know anyone with IBS who goes to the bathroom 30 times a day every day no matter what they eat.
So if your scopes are improving but your symptoms aren't mesalamine may be to blame.

Also, consider something like Imuran or 6 MP as your next stop. Something else to note: some folks can tolerate rectal mesalamine but not oral.

L rachel you said you are on imuran. Is that helping? Also when i looked that drug up before because my dr did mention it it says it is a chemotherapy drug and can cause hair loss. Did you lose your hair?

Slindsay1015 said...
L rachel you said you are on imuran. Is that helping? Also when i looked that drug up before because my dr did mention it it says it is a chemotherapy drug and can cause hair loss. Did you lose your hair?

Yes. I take what's considered a fairly low dose of Imuran, even for UC, because I also take Entyvio. According to my doc, the usual starting dose of Imuran is 100 mg. I do have some side effects: nausea, fatigue, and hair loss. Side effects are different for everyone. There are some people on this board who have very few or no side effects from Imuran.
The nausea and fatigue I experience from Imuran are not as bad as the nausea and fatigue I'd experience from a UC flare. On the hair loss, I am losing hair, but not to the extent a chemo patient would. My hair is thinner, but I'm not bald. I asked my doctor about it, and she recommended zinc and folic acid supplements. Unfortunately, they upset my stomach, but lots of people tolerate those just fine. I'll be giving Biotin a try this weekend.

The hardest part of starting Imuran or any of the more serious drugs, in my opinion, is the wait time. Most of them take at least three months to fully kick in, so you may end up dealing with side effects before you know whether the drug is effectively treating your UC. It's tough not to quit, but at least for me, given the severity of my disease, the risks and side effects associated with drugs like Imuran and Entyvio are worth controlling my UC.