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5ASA no longer working-what have you done next

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Ulcerative Colitis
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Posted 1/11/2019 6:22 PM (GMT 0)
Hi all, I have a scope next week and I’m hoping things look well. However the last time I had one two years ago the doctor had wanted to switch me from my Apriso to Imuran. To me that just seems like a huge step to take. My scope at that time showed active disease in my entire colon but it wasn’t really really bad and I wasn’t really having symptoms so he was willing to let me hold off on the Imuran. I’m just concerned what this next one is going to look like. So for anyone that has had your 5 ASA stop working as well, what did your doctor advise. Thanks!
Posted 1/11/2019 7:59 PM (GMT 0)
If you weren't on retention enemas as well, I suggest that first. Mesalamine, steroid or both.

What are your symptoms, and how have they increased over the past few weeks/month?

q
Posted 1/11/2019 8:21 PM (GMT 0)

lovinmykids said...
doctor had wanted to switch me from my Apriso to Imuran. To me that just seems like a huge step to take.

What makes that seem like a huge step to you? There's risks also to having long term, untreated inflammation and ignoring it. Your UC could spread in extent or severity when undertreated, resulting in a severe flareup in time. Long-term inflammation increases your risk of Colorectal Cancer. As untreated inflammation can turn into dysplasia (a precancer), and then into colorectal cancer. So, I'd say it is safer to treat inflammation with a medication like Imuran than to not.

Good luck on the scope, let is know how it goes. Unless your symptoms have changed dramatically, I would not expect a much different verdict than the least time.
Posted 1/11/2019 8:29 PM (GMT 0)
When my Lialda stopped working (the argument could be made it didn’t work well for very long) my doctor went straight for Humira.

iPoop speaks the truth: even if you feel not-wretched, the goal is always to have no inflammation due to the associated risks. You have a thing, it sucks, the meds can sound scary but they’re helpful. Perfect unmedicated health is not an option here.
Posted 1/11/2019 9:31 PM (GMT 0)
It is more common to go to a biologic now, unless insurance required failing Imuran/6mp first. If the biologic is remicade, then you reall should have a low dose of Imuran too so as to avoid antibodies. Some insurance wants Humira first (because it is cheaper). This does not need Imuran

good luck
Posted 1/11/2019 10:18 PM (GMT 0)
I wish I had gone straight to a biologic rather than the imuran experiment which took 9 months (on high dose prednisone) to figure out it hadn't worked. But i live in a country where the protocol is imuran first then biologics. Because of the cost.
Posted 1/13/2019 2:13 AM (GMT 0)
Thanks for the replies. I guess I shouldn’t be afraid of different meds if they are going to control the inflammation. As far as my symptoms, I have been having more sudden urges to go then I use to. Not every day, but some days I feel like if I don’t get to the bathroom immediately, I’m going to have an accident.
Posted 1/13/2019 4:45 AM (GMT 0)
Start at the basics with rectal meds....mesalamine and steroid at the very least.

q
Posted 1/13/2019 5:16 AM (GMT 0)
I went Lialda --> Humira --> Imuran/Inflectra. Seems standard.
Posted 1/13/2019 8:03 AM (GMT 0)

DBwithUC said...
It is more common to go to a biologic now, unless insurance required failing Imuran/6mp first. If the biologic is remicade, then you reall should have a low dose of Imuran too so as to avoid antibodies. Some insurance wants Humira first (because it is cheaper). This does not need Imuran

good luck

Humira + immunomodulator is just as recommended as Remi + immunomodulator. Each biologic has risks of antibody formation, and each combo therapy reduces those risks while simultaneously giving slightly better odds of remission.
Posted 1/13/2019 3:11 PM (GMT 0)
and then there are some crazy dopes who choose to try alternative treatments when the first line meds don't make the pooper hole happy -

there are lots of options for sure - docs aren't always on board - in fact, some can be down right wrong -
Posted 1/13/2019 4:19 PM (GMT 0)
There are lots of options, including alternative therapies, for sure. And I’d never go so far as to suggest people not try those. But bear in mind that doctors often aren’t on board because there is no good consensus about the efficacy of most alternative therapies. They seem to be highly individualized and situationally specific.

If you’ve got the patience and the funds and the inclination then knock yourself out. But the reason most doctors don’t get on board with it is similar to the reason NASA looks for planets with liquid water in the search for life. While other life forms may exist, we *know* that liquid water supports life. That makes the search more efficient. That’s exactly how medicine should work. If you operate within a sea of unproven variables, you may find something that works for you, or you may waste a whole lot of money and time feeling unwell. You’re the only one who can attach value to your time and health.
Posted 1/13/2019 4:44 PM (GMT 0)
I went from Apriso straight to Entyvio and was in symptomatic remission about 4-5 months later. That was after a year on Apriso which needed steroids to control symptoms. Since I was considered steroid dependent and blood tests ruled the next level of drugs (Imuran and it's like) wouldn't work/be harmful -- sorry can't remember the details now -- we went straight to biologic and picked entyvio because it's more gut specific than remicade. I was scared and resistant at the time but almost two years later now, I'm so happy we went that route. I was lucky that my insurance (Medicare ) didn't require me to try another medication first, and that it covers my infusions under the medical side rather than the prescription side. Since I have a supplemental insurance there's no cost to me.
Posted 1/13/2019 4:48 PM (GMT 0)

Celeriac said...

If you operate within a sea of unproven variables, you may find something that works for you, or you may waste a whole lot of money and time feeling unwell.


Not just money and time but also your sanity. I have driven myself crazy trying to fix myself with diets, supplements, yoga etc etc etc and then feeling terrible blaming myself when they didn't work for me. Or maybe they worked a little bit....but nothing had me feeling better as fast or as strongly as medication. I do believe those people who seem to find the right balance with their diet to control their symptoms but it didn't work for me. Added to which it's very tiring to follow a highly restricted diet and in the worst case scenario can lead to malnutrition. I have been afraid of every drug escalation in my colitis story but the symptoms that they alleviated were far far worse.
Posted 1/13/2019 5:10 PM (GMT 0)
@Poopydoop — yes! I think people mean well sharing their diets and alternative therapies, and I absolutely believe they’ve found something that works for them. But I worry about people who are just getting started, or who have significant concerns about escalating medical intervention, and the potential for them to feel responsible for their continued suffering if they haven’t gone down x-y-z rabbit holes to prevent the escalation.
Posted 1/13/2019 8:27 PM (GMT 0)
Some people want all or nothing....diet isnt that.
I'm still encouraging rectals as well....seems simple to at least try them if never offered.
I don't get it.
q
Posted 1/13/2019 9:30 PM (GMT 0)
"Some people want all or nothing....diet isnt that."

actually, for some, it is -
Posted 1/14/2019 4:42 AM (GMT 0)
You say little about it, expanding might help.
You suggest meds...on occasion. Nothing wrong with that....basics at least?

q
Posted 1/14/2019 2:30 PM (GMT 0)
Generally speaking UC medications are additive, if you take mesalamines now, then imuran is added to the mesalamines and NOT a replacement to it.

You should max out the mesalamines before going up a class of medications. Your max apriso dose, AND 4.0 grams of rectal-route mesalamine retention-enema (that is a rowasa/salofalk/pentasa enema).
Posted 1/15/2019 8:45 PM (GMT 0)
Tried delayed release Sulfasalazine (Azulfidine EN)?

I told my doc that I will not go on any biologic until I am 50 at least. 5-ASA -->Balsalazide+Imuran --> Now Azulfidine EN (generic) Along with Brigg's protocol and resistant starch, maintaining it well.

If interested, and your insurance is good, ma want to take a look at Xeljanz
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