Feeling a bit let down...

[LuckyD]

So I've been on humira for roughly 1.5 years now and back in October 2020 by fecal calprotectin was 30. Yay, finally had normal labs & feeling great = clinical remission!! Fast forward to 2 weeks ago follow up labs, fecal calprotectin was 151. I feel well over all, just softer BMs.

I'm guessing this whole "3 steps forward 2 steps back" with UC is normal? I'm feeling super frustrated and stressed out. I was hoping to try to conceive soon and now I don't feel comfortable knowing I have simmering inflammation. I have already put my life on hold for 2 years since my diagnosis and I'm not getting any younger. I'm also due for a colonoscopy I later this year in Oct (2 year diagnosis anniversary).

I guess I'm just venting...you guys can understand me better than my girlfriends. My GI didn't seem to concern and is not planning on changing any meds just yet. He asked me to just start mesalamine suppositories at night and will reevaluate in 2 months. Of course he told me to call if things get worst and to try not to worry to much. My seed rate and CRP looked normal.

This feel like a punch in the gut...

 

[Jo-mom]

Hello there - it might just be a very minor setback and I wouldn't worry too much. Your blood work is good and your are feeling well and you have spoken to your doctor about it. I believe calpro can fluctuate a little - it's not drastic. You have a plan with your GI and so follow that. You are following up in a couple of months so that is good. Keep us posted.

 

[Lisa]

I ditto what Jo-mom said, could just be a 'blip' especially if you are feeling well.

 

[my little penguin]

Going with Same here
My kiddo was on humira for years
Gi never really blinked at 151 fecal cal
Just watched and it went down
Long May things go well

 

[LuckyD]

Thank you ladies for the assuring and calming words. I guess the engineer in me is used to focusing too much on the lab numbers. I was getting ready to put all my labs in an excel spreadsheet to track everything since I've been diagnosed. Lol

In my mind I'm ready to move over on to something else like Entyvio! I hate being on 4 meds at once...kind of wish I could just be on a biologic and that's it. Wishful thinking...

Hopefully things improve in the coming days and labs look normal for my follow up in 2 months.

 

[Mountaineer01]

If you aren't having any other symptoms, it could just be an outlier. It's been about 2 months - did you get it re-checked?

I'm an engineer as well. While it's good to track data trends, sometimes you can over-analyze and drive yourself crazy, especially when it comes to your health. I have an understanding with my GP, urologist. and my GI. If one of my numbers comes back out of range and I'm not having any symptoms, we check it again in 30 days. Most of the time it's back to normal on the second check.

 

[LuckyD]

If you aren't having any other symptoms, it could just be an outlier. It's been about 2 months - did you get it re-checked?

I'm an engineer as well. While it's good to track data trends, sometimes you can over-analyze and drive yourself crazy, especially when it comes to your health. I have an understanding with my GP, urologist. and my GI. If one of my numbers comes back out of range and I'm not having any symptoms, we check it again in 30 days. Most of the time it's back to normal on the second check.

My fecal calprotectin has improved! We are now down to 58...not in the normal range but very close. GI said not to worry...I'll be getting a scope done next month and he's confident it will be "remission " for me. Other than that no symptoms.

 

[my little penguin]

That’s great news !!!!
(Engineer here as well )
Remember one test is just one data point
It is not a line or a trend
Multiple tests are a trend
I have put my kiddos ESR in a +/- 3 sigma trend chart (ten years of Data -every three months )
The Gi just laughed
But we now know esr of 8-9 (0-20 ref. Range ) is him under control
When it creeps up up 14-18 the Gi pays close attention even though it’s still normal but way outside my kiddos norm

 

[Mountaineer01]

Glad to hear the numbers are looking better! I was hoping it was only an outlier.

Hopefully the scope goes well and you'll be declared in remission. It's a wonderful feeling, let me tell you!

 

[LuckyD]

Wow. Your calprotectin levels are so low !
I started injecting Humira every 2 weeks around June 2018 and I started injecting every week around July 2020.

Here's my calprotectin levels :
3-5-2018 : 694
12-20-2018 : 420
6-19-2020 : 668
4-8-2021 : 568

I have now been prescribed Stelara.
I hope to get the Stelara Infusion soon.
I would jump for joy if my calprotectin level was 150. Hopefully next year my number will be lower.

I hope stelara works amazingly well for you. Yes, I guess I should be greatful for having low numbers. I tend to get fixated on the small things...this disease can be so overwhelming.