HealingWell
Search Close Search
☰

Stuck in a strange place.....

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/10/2023 9:38 PM (GMT 0)
I had been on Tofacitinib maintenance level at 5 mg. per day twice a day for over a month......my urges had calmed down to the point I could make it to the toilet on time so I thought I had really turned the corner. Then last week I went back to VA Hospital GI Clinic and was informed that my submitted stool test showed that my inflammation had actually worsen. I was very surprised by this news as my urgency level had improved enough that I could go out into the public again without fear of embarrassment. GI wanted me to increase my dosage to 10 mg. twice a day and submit another stool test within 2 weeks now. Not understanding how the inflammation could have worsen yet my symptoms seemed to have improved....hard to understand. Can anyone else relate to this so I can better understand?

Post Edited (WayneTX) : 11/10/2023 1:51:36 PM (GMT-8)

Posted 11/11/2023 2:37 PM (GMT 0)
Wayne, this sounds like the fecal calprotectin test, do you know how much out of normal range it was? You can probably look on your patient portal to get the numbers.

With this test some people can have a high count with no symptoms, or just a moderate amount over & have symptoms.

Going to have to wait & see what happens after 2 weeks. Try not to stress over it.
Posted 11/13/2023 9:45 PM (GMT 0)
thanks straydog
Posted 11/14/2023 12:17 AM (GMT 0)
Hi Wayne,

Iam sorry you are dealing with the dilemma of high calprotectin and low/no symptoms.
Welcome to my world!!!
This regularly happened to me in the past. I have almost stopped checking calprotectins because of how ridiculous it has gotten.

I have had times when it has gone up to 500 for a few months and yet I had very very few symptoms. This happened as recently as mid 2022, while I was on Entyvio.

Then, I have had times when it came down to as low as 200 and yet was in a full blown flare with blood, urgency and the lot. This happened as recently as April 2023. When Entyvio stopped working for me.

No one yet can explain why.

My GI's opinion on this: if I feel well then we will go by my symptoms only. He never changed my meds just because the calprotectin was high. But then again, I have been on a yo-yo of flareups and (short-lived) remissions since mid 2020 so I really do not know if his approach is the best.
Posted 11/15/2023 1:04 AM (GMT 0)
I believe they said my calprotein score was 800-something. They said my inflammation was worse than the last testing. I do more testing the end of this month and see my GI again on Dec. 18. I have been able with just a few exceptions not have urgency symptoms so bad that I can't make it to the toilet in time. I am able to go back out in public with less fear of having an accident. I am grateful for all that, but it still blows my mind that every time they test me they say the inflammation has worsen ????
Posted 11/15/2023 8:00 AM (GMT 0)
I used to have high calprotectin and not too many symptoms until I had a proper remission and it went below 50 and stayed there.....
Without performing a scope they cannot see how much inflammation is. But a high calprotectin does suggest you are not in a stable remission (although it doesn't indicate where or how much inflammation there is... you could just have a few cm in the rectum for example)
They say calprotectin rises in advance of symptoms...basically the best predictor of a sustained remission is having a low calprotectin.
Posted 11/16/2023 1:47 AM (GMT 0)
thanks for the explanation.........I got a call from my GI Clinic yesterday and they said yes my calprotection tested at 834, which is high and normal is 50. She then added I have seen calprotection results as high as 8,000. No doubt I am not in remission yet. It seems the med is basically working but still not resulting in normal stools......basically mush is the best way to describe it. More testing will decide the next move.
Posted 11/16/2023 1:42 PM (GMT 0)
8,000! Wow. I was freaking out when mine tested at 149 and then 105. I had no idea what kinds of values you could get to.
Posted 11/16/2023 2:08 PM (GMT 0)
My highest was over 5000...and I wasn't even flaring that bad. Last check this year...over 900...results pending on the test this week. And I am flaring the worst I've ever been. So if my score goes down...I will really be confused.
PS...do these tests take up to 2 weeks for results? I'm impatient I guess
Sassy
Posted 11/16/2023 3:40 PM (GMT 0)
My GI told me up to 4 weeks, but the longest I've had to wait is 2 weeks.
Posted 11/16/2023 7:37 PM (GMT 0)
Think my highest was around 2000.... The test itself does not take long but what my doctor told me is that the lab where my samples go will wait until they have a full tray of samples before running the test (i.e. it's more cost effective to do many in one go) so sometimes I've had results back in 24 hours and sometimes 2 weeks...
Posted 11/16/2023 10:33 PM (GMT 0)
Ah! Interesting! That would explain the variable turnaround times I've encountered.
Posted 11/17/2023 2:32 PM (GMT 0)
Oh for poops sakes! 💩 lol
✚ New Topic ✚ Reply