HealingWell
Search Close Search
☰

How long were you on 5asa type drugs until you moved up the ladder?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/10/2015 12:18 AM (GMT 0)
I just wonder since usually when you get dx doctors start with mesalmine of some type depending on severity.

So then I wonder if most if us tolerate them for the same duration before we have to move onto either 6mp or biologics.

I know some are lucky enough to stay mesalamine forever, but curious about those who aren't.

:-) idea idea
Posted 2/10/2015 12:33 AM (GMT 0)
Highly variable, depending on disease severity and patient response. Some have been on meslamines a decade or more without issues. For me, it was 1 year then I flared up and went up the ladder in a sprint ending with remicade.
Posted 2/10/2015 12:42 AM (GMT 0)
Isn't that just so weird? I really interested to see the differences in us all.
Posted 2/10/2015 1:03 AM (GMT 0)
I've been on them since April of 2009. Had two flares but been in symptomatic remission for 4 years. I have a flex sig later this month. What will my GI say if she still sees inflammation though? Probably to go on something stronger which I don't want to do if I'm not having symptoms. Hoping for the best.
Posted 2/10/2015 1:21 AM (GMT 0)
back in 2006, i did a month of rowasa and then nothing after until 2011. i started on lialda and more enemas. 8 months later, i wound up on prednisone, 6mp, remicade, canasa, flagyl, cipro, prilosec, zofran, iron, and god knows what else.

been a tough case ever since.
Posted 2/10/2015 1:35 AM (GMT 0)
I used 5asa and Canasa 5 months. then to Remi
Posted 2/10/2015 1:44 AM (GMT 0)
I've been on them for six years. I used pred to gain remission from a bad flare, and steroid enemas from a very minor one.
Posted 2/10/2015 2:34 AM (GMT 0)
They didn't have nearly as many med options that we have now when I was diagnosed. So all I was on was Asacol and Rowasa. I stayed on that for about 10 years, then moved onto Colazal because I could no longer tolerate mesalamines. When Colazal failed me, my doc added in 6mp, then when 6mp failed me, he added in Allopurinol to my Colazal and 6mp. I shortly became severely allergic to Allopurinol and then I went on Remicade. Eventually the Colazal started giving me issues too so he switched me to Apriso along with the Remicade.

So it pretty much took me 19 years to get to the end tier. But like I said, mainly because they didn't have these meds at the time. My UC is extremely stubborn and I would all out flare to simmering all these years.
Posted 2/10/2015 2:43 AM (GMT 0)
It looks like it took me a couple years, iPoop about a year, Shaerbear 5 and counting, Banana less than a year, 5 months for Monkey, Fruitgirl 6 years, Red wins at 10 years!

I wondered if anyone has ever been able to actually maintain for life but it looks like that probably isn't the case.

This disease makes me so incredibly sad, not for just me, but for all of us. I now walk around with a hole in my heart too.

But enough of that!

We do have other options such as they are
Posted 2/10/2015 2:51 AM (GMT 0)

DMC2011 said...
It looks like it took me a couple years, iPoop about a year, Shaerbear 5 and counting, Banana less than a year, 5 months for Monkey, Fruitgirl 6 years, Red wins at 10 years!

I wondered if anyone has ever been able to actually maintain for life but it looks like that probably isn't the case.

This disease makes me so incredibly sad, not for just me, but for all of us. I now walk around with a hole in my heart too.

But enough of that!

We do have other options such as they are

I'm six years and counting though and am in an excellent remission. Quincy's been on them the entire time she's had UC - at least 20 years, I think.
Posted 2/10/2015 2:56 AM (GMT 0)
I started on asacol in 2001. My doctor must have missed the class in residency about UC and pharmacology because he had me stop my meds after getting better and of course I didn't do well. Then I moved to another state and my new doc added rowasa when I was becoming more symptomatic. Returned to PA and don't ask me why, went back to original doc. After colonscopy, once again told me to stop meds. Ended up in the hospital with a flare and found a new doctor. So doctor #3 immediately suggested remicade but I put it off for about a year, using prednisone as a rescue. In hindsight, I was poorly controlled from 2001-2007 but didn't realize it. My treatment should have been more aggressive and I lived with cramping and always on stake out for a bathroom. Doc #3 never mentioned the immunosuppressant class of drugs and my insurance didn't require it at the time. Now I've moved on to doc #4.
Posted 2/10/2015 3:41 AM (GMT 0)
I've been on them since my initial diagnosis in '95 or '96. Wasn't always on top of taking them though, and though I can't remember for sure now, I think I went up to a year without taking any anti-inflammatory. Briefly tried Uceris (see signature) about a year ago, but that stuff is a no-go for me. 5ASA's + VSL are working pretty well for me.
Posted 2/10/2015 3:54 AM (GMT 0)
I did well on them for about 1.5 years and then I was hit with a really relentless flare up that would not go away. At that point I did prednisone and eventually 6mp. I got about 2-3 years from 6mp, then BAM, uncontrollable flare again. Since then, I've been struggling. Even Remicade didn't work for me.
Posted 2/10/2015 4:12 AM (GMT 0)
That's right I think that Q has been on for long long time, so lucky, if you can consider us lucky. But I would love to be in remission from them for that long.
Posted 2/10/2015 4:22 AM (GMT 0)
Hmm... I think I started with 6mp, haha. I remember being on it as well as 5-asa's at the same time trying to get my gut under control. From there I was basically always on 6mp, until 1.5 years or so before I began Remicade. My levels were too high for my liver. I stayed on Pentasa for a year, then stopped that because I was doing well with alternatives and didn't feel the Pentasa was doing much. Then had a bad flare and was put on Remi. Now I'm back to no treatments... except on pred for the pains which is a nice insurance against a flare at the moment.
Posted 2/10/2015 1:44 PM (GMT 0)
Like almost everyone at that time, I was put on Asacol immediately following my first scope. It made my symptoms so much worse I had to go off it and onto Pred within a week. I started on Balsalazide about three weeks after diagnosis, and am still on it thirteen years later.

Since the 5-ASA's didn't get me anywhere near remission, my GI added Azathioprine after about four months. Four years later Remicade had been approved for UC and I was still flaring badly, so I started on Remi.
Posted 2/10/2015 1:57 PM (GMT 0)
T what are you going to do for maint?

Judy glad remi is working for you!
Posted 2/10/2015 2:54 PM (GMT 0)

DMC2011 said...
T what are you going to do for maint?

Hoping for the best, lol.

My situation was just difficult. The pains I have experienced since August 2012 have been crippling. I saw all the specialists around my city we could think of and I did not get any closer to knowing an answer. I associated them with Remicade, and stopped it.

Why do I think I'm not flaring now?
-I am so, so much less stressed right now. I owned a stressful company with my dad who was having bad health problems. We sold the company and he is taking care of himself. I'm essentially semi-retired momentarily, and from here on the next business I get into I will choose to align with my body's needs.
-I'm gluten-free. It is helping me. I never before had great luck with diet, but after I stopped Remi I began to get normal colon pains indicating issues may come my way. I changed to gluten-free and have since not had too many of those pains.
-I'm taking Turmeric root and L-glutamine powder; both have proven very useful in the past when I needed help with my colon.

**Also, since one month ago I've been on prednisone to treat the pains. I went 2.5 months without any meds for UC, but now I'm sure the prednisone is an extra layer of insurance against any UC rumblings.

Plan is to see if I can get rid of the pains. Then be off pred for a few months. Then at that point evaluate, and consider Humira. That way, if I get the pains again after starting Humira we can really know that my body just doesn't like Anti-TNF's. However, if I'm doing so well at that point I will strongly consider not going on it. Time will tell, I'm sure I'll know a lot more by then...
✚ New Topic ✚ Reply