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What's next after Remicade? (Or do I have to quit Remicade?)

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Ulcerative Colitis
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Posted 10/29/2019 11:31 AM (GMT -6)
Let me start by saying that I have already emailed my GI.

But I'm interested to see if others have experienced this. So I started Remicade in late August and have had three infusions. A week after my third infusion, I had blood tests (test on 10/13). My liver enzymes were slightly elevated but not crazy, so we adopted a "wait and see" mode.

Yesterday I had my annual physical and as part of that, had pretty much the same blood tests. This time, three numbers were pretty out of whack:

Alkaline Phosphatase, S
10/13 - 47.0
10/28 -- 144.0

AST (SGOT)
10/13 - 47.0
10/28 - 222.00

ALT (SGPT)
10/13 - 59.0
10/29 -288.0

Seems like a big hop in a couple of weeks. Anyway, I presume this means that I can't stay on Remicade? If that's the case, what's next?

Thanks all!

Oh, I'm including my signature but I think it's out of date.
Posted 10/29/2019 4:53 PM (GMT -6)
Sorry, I don't have an answer to your questions, but I wondered if we are supposed to get regular bloodwork while on Remicade or was yours a special case, i.e. you were experience side effects that led your GI to test you? Please update us when you hear back from your doctor.
Posted 10/29/2019 5:29 PM (GMT -6)
7 Years ago I was started on Remicade for UC. At that same time I was experiencing every sciatica back pain nd at time was unable to walk or function. After the first infusion I experienced total relief. I have not have any sciatica pain for 7 years. Now I may need to get off Remicade. I'm wondering if the infusion drug Entivo will also help with the sciatic pain.
Posted 10/29/2019 6:02 PM (GMT -6)
Not really sure either. I'd defer to your gastroenterologist on the blood work. Blood anomalies are listed as a rare side effect of all of our meds, and that would qualify. I'd expect discontinuation of said med.
Posted 10/29/2019 6:18 PM (GMT -6)

Sara14 said...
Sorry, I don't have an answer to your questions, but I wondered if we are supposed to get regular bloodwork while on Remicade or was yours a special case, i.e. you were experience side effects that led your GI to test you? Please update us when you hear back from your doctor.

Sara, my GI ordered bloodwork to be done before I started Remicade in order to be sure that my liver enzymes were not already elevated and that I didn't have Hepatitis B. Then, after three infusions, she ordered the same tests. These tests didn't surprise me, as I thought I already knew that liver damage is a potential problem with Remicade, and a friend who was on 6-MP was required by his GI to get regular liver function tests done, as well. I also was asked about tuberculosis, since Remicade carries an increased risk of TB as well. I have been having regular TB tests for my volunteer work so I could assure my GI that I was clean.
Posted 10/30/2019 6:59 AM (GMT -6)
I see, thanks. I got tested for TB and Hep B. I didn't realize liver enzymes were part of that testing. I know people on Imuran get regular bloodwork done, but I have not heard of that for Remicade. Sorry to hear your tests came back bad. Another thing to worry about with Remicade... :/
Posted 10/30/2019 8:28 AM (GMT -6)
Blood tests for liver enzymes are not usually part of starting remicade. Blood anomalies are so rare, they aren't tested for (remicade very, very rarely has any liver complications). It's the same with mesalamines, they have equally rare odds of liver issues, and few get liver tests (hepatic/liver function panel blood test) when starting them.
Posted 10/30/2019 10:12 AM (GMT -6)

iPoop said...
Blood tests for liver enzymes are not usually part of starting remicade. Blood anomalies are so rare, they aren't tested for (remicade very, very rarely has any liver complications). It's the same with mesalamines, they have equally rare odds of liver issues, and few get liver tests (hepatic/liver function panel blood test) when starting them.

haha maybe that's why my GI was so freaked out by the results. She's asked me to get an abdominal ultrasound asap. I'm sure it's just fatty liver syndrome (non-alcoholic), but the liver function has prevented my thyroid meds from being absorbed properly so my TSH levels are crazy crazy low, and frankly I'm grateful to have a reason to point to for the fatigue and fuzzy brain that I've been having recently.
Posted 10/30/2019 6:09 PM (GMT -6)
jan...IF you must stop Remicade, there are many other biologics to go to. After many years of Remicade infusions, I can tell you, Remi worked better than anything I've been prescribed since. I'm now on Entyvio but it is so slow that it's hard for me to say just how much better things are. I had more problems with 6MP than with Remicade. They're all strong drugs and I wish we could just live without them; but know...you do have more options than Remicade. Never give up!!!
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