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Have you stopped Azathioprine?

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Ulcerative Colitis
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Posted 6/9/2020 10:21 PM (GMT 0)
Hey there,

I haven't been in a flare for about a year now (honestly I think it was Rowasa that helped stop it as my flare only occurs at very end of colon). Currently taking Inflectra, Imuran, Lialda, Rowasa. And after my last Imuran blood test, my doc said levels are low and I'm already on 175mg, meaning it's not really working and it could have adverse side effects if we go higher. PLUS she said since I've been on it for 2 solid years, it's time to consider stopping if I'm in good shape. And that that is becoming GI protocol w/Imuran.

My fear is that I will immediately flare or develop antibodies against Inflectra. But I suppose if it's not showing up in blood, it's not doing anything anyways. And honestly, I think I'm being overmedicated. Has anyone else been in this position? It's like I have to make up my own mind but like I have no idea-- I'm not a doctor! Then of course, there's the fear of the flare.

Let me know if anyone has had this experience or even just has some insight.

Thanks,
D
Posted 6/10/2020 1:36 AM (GMT 0)
Have you talked to your gasteroenterologist about reducing your meds if you're 1 year into a remission? That'd be the best place to start. It's a general truth that it takes a lot more meds to initially achieve a remission than it does to sustain it. So tapering some meds slowly and controlled over time is a reasonable request. The ultimate goal would be to keep you in just the humira for your maintenance med. However there would be no rush to get you there.

Usually the mesalamine is ceased 1st, not the aza. Mesalamine is often ceased cold turkey. Might be common to cease rowasa 1st, wait 6 months and then cease the lialda. Wait another 6 months and then consider tapering the aza. Always risk in tapering any med.

There's nothing special about stopping aza, it is often done cold turkey. No harm in tapering. Yes there's a risk of flaring when ceasing aza, but it's delayed. Be a few months as that medcs affect doesn't fully clear until 6-8 weeks after last pill. Then inflammation can slowly buildup to produce a flare a few months after ceasing.
Posted 6/10/2020 7:45 AM (GMT 0)
I think you're most likely to form antibodies in the early stages of treatment. When I took remsima (biosimilar) it had always been the plan to at least reduce the dose of imuran if not stop it completely, in the long term. Except remsima didn't work very well for me so I stayed on it until I switched to another drug.
If I had a choice I would stop the imuran before the other drugs because it has the weakest safety profile of the three, and like you said it does not seem to be contributing greatly to your remission.
Posted 7/1/2020 11:10 AM (GMT 0)
If she thinks its a time to stop it then stop it because if the levels are low at 175mg, it will stop working sooner than later. I used Aza for 4 years until it quit and I ended up in worst flare of my life. So if removing Aza is going to put you in a flare, you do it now so that it can be addressed before you end up in a full-blown flare.

I personally don't see much benefit in adding mesalamine once you are on the biologics. and TBH, I don't like biologics at all due to their mechanisms of actions. There is a lot of unknown (even though most GIs push down the throat as if that's the only treatment). So if I were you, I would very seriously take that advice and trim down the medication list. I would also look into a significant lifestyle change.

Look up Brigg's protocol. I can not live an austere life as he does. Wish I had that much will power but I picked up a lot of snippets from his protocol and modified to my needs. So far the gut has been peaceful.
Posted 7/2/2020 9:18 PM (GMT 0)
Thanks for these responses.

Looks like we are going to discontinue AZA, Lialda, and Rowasa and put me on a monotherapy of 10mg of Inflix and that's it. The doctors are right there's no reason to be on mesalamine so it's best to get me on just one single med. I mentioned in another post that my Inflix level was on the low end so she wants to increase it to 10mg, which is frustrating because I'm not in a flare and doing really well. Yet they are constantly wanting to up meds. Sometimes I feel like GI doctors have one sheet of paper that they follow: "Oh your level is a bit low, up the dose." "Oh you've only had three colonoscopies this year, you should have four." It's frustrating.
Posted 7/2/2020 9:51 PM (GMT 0)

DavidEA said...
It's frustrating.


Couldn't agree with you more. I was in the same boat a few years ago and I was offered Humira. As I mentioned, I am against the biologics so I took things in my hand. It takes time and one needs to do meticulous research along with some trial and error to figure out what works and what doesn't.

Hence I suggested Brigg's protocol. Take a look. Even if you don't do it, worth taking a look at some other perspective that has been implemented successfully.
Posted 7/2/2020 11:04 PM (GMT 0)
Sounds like you have a proactive team on your side.

Mono therapy at 10mg seems a good protocol to move to.
If you'd rather stay at your current level of inflectra, or inflix, have a discussion about it.
You could stay at your current level for a couple months and see if you remain healthy. Keep some Rowasa on hand.
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