Asacol and Pentasa don't work, what will?

Hi Everyone,

This is my first time ever posting in a site.

I was just diagnosed with Ulcerative Colitis in Sept 15 2015. It kind of came as a shock because I thought I just had internal hemorrhoids so I actually didn't even know that this was a thing. Long story short, I was eventually put on Asacol which caused me to have my first flare. I was able to get it under control with Prednisone. I had tapered down to 10 mg and my GI was started me on Pentasa as a maintenance drug. As soon as I took it, I went right back into numerous loose bowel movements. I figured the same thing was happening as with Asacol so I stopped taking it. When I went back to my GI, he said he recommended that I go straight to Humira. I would prefer to not go straight to the biologicals but I don't know what other meds I could go on if Asacol and Pentasa make my symptoms worse. I was just wondering if anyone else has had issues with Asacol and Pentasa but finding success with another maintenance drug that isn't as intense as a biological? I'm supposed to meet up with my GI next week with my decision because as we all know, being on Preds for a long time is not good. Thank you so much.

I started to take 6MP after the asa drugs weren't enough. 6MP is a generic immunosuppressant, commonly used as a maintenance drug for UC, taken orally once a day. It gave me several good years of remission before I had to start adding a biologic drug to my regiment.

One negative is it takes several months for it to start working; when I started on 6MP I was coming off a severe flare which required hospitalization and was tapering prednisone. My doctor tapered the prednisone very slowly while I started the 6MP to help get me into remission. Also worth noting -- the drug is metabolized in the liver, so you will need routine blood draws at the lab.

Good luck! This disease is tough but you've found a great online community and it sounds like you are doing a good job of staying on things.

Without more specific information, I'd first recommend trying a mesalamine enema before moving on to the harsher stuff

Brookecat, what you describe sounds like a mesalamine-intolerance reaction. Roughly 8 percent of patients have an intolerance to mesalamine and have to discontinue treatment. An intolerance is described as a dramatic worsening of uc symptoms (dramatic increase in frequency, urgency, etc.).

What to do? First avoid all mesalamines, the first class of anti-inflammatory medications. Second, look at the second class of uc medications, immunomodulators: Imuran (aka azathioprine), or mecacaptopurine (aka 6mp). As stated, they do take 2-3 months to kick in and you usually need a bridge medication like prednisone in that interim.

Some gastroenterologists are jumping right to the third class of uc medications, biologics (remicade, humira, simponi, and entvyio), as they work faster (typically in 6 weeks). But you'd still likely need prednisone as a bridge.

To ushippedyourpants? (I like the name),

Before I took asacol, I had an average of 4 -5 bm's a day of loose stools and trace blood. There was also urgency and some pain right before the bm. Then after I started taking the asacol, the bm started increasing to my max of about 10 - 12 a day and turned into straight bloody liquid stools. I began having more pain throughout the whole day and it went into my joints as well.
Yes, I had a colonoscopy but not with my current GI. I was diagnosed with moderate to severe pancolitis
The only changes to my diet are to a low fiber diet and I avoid a lot of veggies unless cooked and pureed because that would cause me problems before.

Thank you.

To ipoop:
I was really hope there was another similar drug I could take before I went to 6MP or remicade. I read somewhere about a drug called colazal which is balsalazide that was working for some people after trying pentasa or asacol. Is balsalazide just a different word for what asacol or pentasa are made of or is it actually different?

Thank you.

To Mad Martha,

That's what I'm hoping for it that there is another one that will work and maybe it's just the pentasa and asacol that don't work for me. Did you go on the enemas at the same time?

Thank you

Balsalazide (and sulfasalazine) are a more complex molecule than mesalamine. Your gut bacteria break that into mesalamine and a byproduct. So, it's essentially the same medication doing the job. Just a different mechanism of delivering it to the medication's target site. Lialda/asacol and others use a ph-based chemical coating that dissolves and releases mesalamine in the large intestine.

I guess I should explain better that when I was just on Preds, my symptoms were pretty much gone. They didn't even come back when I tapered to 10 mg. It was just when I started the pentasa that every thing came back. When I stopped the Pentasa, it took about 3 days to get back just having 1 - 2 bm a day with little to no pain.

I'm just worried about being dependent on drugs forever so I'm hoping not to move up to 6mp, Imuran or Humira.

I was thinking of asking my doctor when I see him if I could try just going onto VSL#3 and a suppository or enema to try first before moving up.

Thank you L Rachel for letting me know about Colazal having the least negative side effect on you. That's the one I'd be willing to try and see if it is different and maybe I have problems with the outer capsule.

I definitely appreciate everyone's comments.

Does anyone know if taking VSL#3 while on Prednisone will have a negative effect?

I would highly advise trying different versions of mesalamine before moving to the harsher stuff. At least this would confirm if you're mesalamine intolerent, or if asacol and pentasa just weren't sitting right for some reason.

"I'm just worried about being dependent on drugs forever..." Uc is an autoimmune disease that requires a maintenance medication for life. There is no cure for uc, the medications only treat symptoms, stop those medications and your symptoms will return.

Yeah, it's a real headtrip to come to terms with. Most of us are young and healthy than *wham*, chronic illness, and medications for life.

I think there's nothing wrong with climbing up the uc medication ladder, provided each class of medication is first maxed out. Uc can be darn aggressive and early on, with some patients. And it's not a leisurely, gentle climb up that medication ladder, but rather a fireman's sprint upward to keep symptoms under control and prevent uc from spreading.

To start off, uc is an autoimmune disorder where the immune system attacks the large intestine which causes inflammation and the other horrible symptoms we experience.

The first class of medications are anti-inflammatory medications (asacol, lialda) and it's best to max those out (4.8 grams per day) along with enemas (4 grams a day). If you're symptoms aren't controlled then it's time to climb the uc medications ladder.

The second class of uc medications is immunomodulators (Imuran, 6mp, aza) and they work by reducing your immune systems attack ability. The immune system attacks using lymphocytes (also known as white blood cells), and immunomodulators intentionally reduce your WBC count, which weaken your immune systems attack. It's quiet scary for most patients to move up to the second class of uc medications (myself included). However when you weigh the benefits against the actual risks, you'll find that it isn't a big deal. I've been on them for over 2 years and have yet to get experience a side effect.

The third class is biologics (remicade, humira, simponi, and entvyio), and it does bother me that some gastroenterologist's choose to skip class 2 and go straight to class 3. They're expensive brand name medications that are effective in severe cases where the lesser medications didn't work. And I think it's best to exhaust other classes first.

brookecat said...
Hi iPoop,

I phrased that incorrectly. I am starting to come to terms that I will be on medication for life but am mostly curious if it is worth looking into the 'lower' forms of medication before taking the big dive into biologicals or something like 6MP. Do you know why doctors are now starting to recommend humira/remicade before exploring other options? Is it a new fad?

Thanks

Great question! Who knows. The best thing to take away from this, is that it is extremely important to research UC yourself and to be your own advocate. It amazes me how many stories I've seen here of GI's barely touching the easy meds before going straight to biologics. I left my first GI because of that. After trying ONE mesalamine pill and ONE steroid pill, he said I should start thinking about biologics. No rectal meds, no trying different brands, etc. When I started rowasa with my next doctor, my symptoms were gone the next day.

I also have problems with pentasa. But it took me a year to find out. I was put on pentasa straight after diagnosis and a corticosteroid. After tapering the corticosteroid out I was more or less OK. Not perfect, but I had an endoscopy and everything looked fine. So the doctor told me I could also reduce the pentasa from 4g to 2g a day. All went kind of OK in the beginning but got worse and worse with time - many watery bms. The doctor told me a couple of times I should increase the pentasa again. I didn't do that. Instead I just quit it. After two days I had normal bm. And that after at least a month of watery bms. That was half a year ago and I have been fine ever since. Maybe you are in a similar situation. Maybe the Prednisone brought you into remission and you are fine without medication, at least for now.

Just curious killer = did the end of asacol and beginning of lialda occur at the same approximate time or was there a significant lapse in time between the two ?