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Ulcerative Colitis
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Posted 3/2/2021 1:44 PM (GMT -5)
Hi team,

7 month flare here, failed Humira, heading to 2nd dose of Stelara next week ----- I see some moderate improvement here at 7 weeks, should I be happy with that? I thought Stelara should show results WITHIN 8 weeks. Anyway -

With continued urgency and cramping, doc is switching me from Lialda to Sulfasalazine.

Anyone else out there tried this? Looks like an older drug, that doesn't make it bad, but seems like a lot of potential side effects. I've never had issues with mesalamine in any form but she believes this is "stronger".

Consult with the head of GI at University of Chicago on the 15th, FINALLY appointment for second opinion with my old GI on 22nd (dropped him due to geography, 1 hour away is tough in the car with a flare!) but present GI is rather unresponsive and does not explain well :--(

Take care,
P
Posted 3/2/2021 3:08 PM (GMT -5)
At my 1980 DX I had no choice besides steroids except sulfasalazine, which presents problems due to the sulfa bonding. If you do decide to try it, ask for the enteric-coated tablets; otherwise you'll likely get stomach issues if it dissolves there. A statement that it's "stronger" than Lialda sounds dumb to me; also, it's unlikely to reduce urgency very much, if at all. You might do better by adding a course of retention enemas instead. Good luck with your U/Chicago consult, a wise idea! / Old Hat (40 yrs with left-sided UC; in remission taking Colazal)
Posted 3/2/2021 4:03 PM (GMT -5)
Thx - I put stronger in quotes to avoid the confusing way she explained it to me, sounds basically like a different mechanism to address the same issues that mesalamine does.

Also, she said stop the enemas as they clearly aren't helping. Well, they're not hurting! (Mesalamine)

Frankly I think she's grasping at straws as I seem to be refractory :-(

Also - anyone else reading this - she will not try me on Remicade bc I failed Humira "same class of drug". Any experience?

DEF looking forward to research hospital intervention, if not, am headed to either Hopkins in Baltimore or Cleveland Clinic before I lose a body part to this disease. So frustrating not being "heard" especially in this pandemic time, was looking at another GI for 2nd opinion,,,first opening in JUNE. Insane.
Posted 3/2/2021 7:40 PM (GMT -5)
Are you in Ohio? My former GI moved there and he is soooo awesome! I’m not sure what town he’s in but if you’re interested his name is Charles Oberer and looks like he’s with Kettering medical group.
Posted 3/2/2021 9:36 PM (GMT -5)
Moderate improvement after one dose is a good sign after flaring for 7 months. Stelara tends to be a little slow at first and steadily gets better. I would stay with it. I know we hear people say oh, I could tell a big difference after one dose, those are rare. Hang in there.
Posted 3/2/2021 9:40 PM (GMT -5)
Yes, you should have an initial response from stelara within 8 weeks if you're going to.

No, sulfasalazine isn't stronger than mesalamine. Sulfasalazine is a protomesalamine, a more complex molecule that gut bacteria break into mesalamine and a byproduct. That byproduct is a sulfite which can cause headaches in about 20 percent who take it. Some have a sulfite-allergy, avoid if so.

Yeah grasping at straws perhaps, as maybe you've never tried it before?

You try thiopurines azathiopurine, imuran, or 6-mercaptopurine? You didn't mention them...

Research hospitals are good, I go to one myself. Doctors are running clinical trials and aware of ongoing research treatments.
Posted 3/14/2021 3:35 PM (GMT -5)
Just an update - Rx was delayed, out of stock so just started taking it Thursday (today is Sunday); did NOT get the enteric coated even though specified to doc; and OMG. Old Hat......the nausea is unbearable, vomited...and I started with just one / day - Rx is 3 AM, 3 PM. Have stopped until I can get response from doc.

Rough stuff!

Also, now pretty sure we are looking at psoriatic arthritis; thought the incredible full back ache and joint pain was the Humira when I was on it. Oddly my dermatologist (who has it) described it to me, sausage fingers and all......hopefully the Stelara will resolve that as well. Sigh.

Had second dose of Stelara Thursday, please send good vibes.

P
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