Raised calprotectin while on pred+imuran

[willpwuk]

Hi Everyone,

I just got my calprotectin results back just to see how i was doing. I've been a little symptomatic but nothing like i've experienced before. Anyway, my results came back at 121 on the 50ug cut off. Huge difference from previous results i've had (It was as high as 700 at one point.) Bare in mind i'm on pred+imuran at the moment. So my GI suspects that those have masked the numbers a bit.

Question: Has anyone had results >50ug-200 that have then warranted further investigation to show that they're still flaring even while on say maintenance meds, because i've read some posts on here that say even though high these numbers are considered good for some people with IBD, and some conflicting saying that ulcers were found within that range.

They had me test for infections and cultures etc - those all came back fine so it looks like there's still some inflammation in my bowel.

 

[Maya142]

My daughter had a fecal calprotectin of 200 while on Prednisone and Imuran. She was on a relatively low dose of Prednisone for her arthritis not for her Crohn's - about 12.5 or 15 mg.

Anyway, she refused to go up on Prednisone, so her GI added Entocort (9 mg). 6 weeks later, she had scopes that despite the Imuran, Prednisone AND Entocort, showed ulcers and inflammation in her terminal ileum and cecum.

It was not severe inflammation, but considering she was on two steroids and Imuran, I was surprised they found anything at all!

The scope prompted us to try Imuran + Allopurinol and when that didn't work, she was put on a biologic.

 

[Layla]

Hi Everyone,



Question: Has anyone had results >50ug-200 that have then warranted further investigation to show that they're still flaring even while on say maintenance meds, because i've read some posts on here that say even though high these numbers are considered good for some people with IBD, and some conflicting saying that ulcers were found within that range.

Yes I've had similarly low numbers which didn't worry my specialist but then an MRE came back with 30cm of inflammation. I think that may be unusual but as you see still possible.

I think I remember reading somewhere that if the disease is higher up the small bowel, low CP numbers can still mean disease. Mine is mostly beyond where a scope can see so that fits.

Where's yours usually?

 

[Anna's Bandit]

I just found out that my calprotectin level is 694 and my doctor's office wants me to wait 3 weeks for a consultation with a nurse practitioner. I have been sick for 6 weeks now and my condition is getting worse and now I am on a liquid diet only but my symptoms are feeling worse and I don't want to wait 3 weeks. I don't recall ever having my calprotectin level checked before and I am learning about calprotectin and the numbers here on these threads. Thank you for sharing your stories and thank you for listening. The only medication that I have been taking for a while now for my ulcerative colitis is cholestyramine powder and I am not taking any other kind of anti-inflammatory medication whatsoever whether it be in pill form or infusion drug.

 

[crohnsinct]

Calpro does return lower for small bowel disease. My daughters' GI likes cal pro to be under 100 for small bowel disease. Over 100 will get you a retest in 4 weeks and usually if elevated again a treatment adjustment.

It can take a while for cal pro to come down. My older daughter has been in a flare for a long while. On Remicade 10 mg/kg every 4 weeks and various lower doses of prednisone (started at 20 mg and tapering 5mg per week). She got 1450 cal pro in December, >2500 in January and with no changes to treatment 19 in February. So it could take a while and colonic disease can return high numbers and they can swing greatly.

My younger daughter with all small bowel disease recently got a level of 250. She is symptomatic. GI decided to retest in 4 weeks. That same just went in so not sure what he will do if elevated again.

 

[willpwuk]

My daughter had a fecal calprotectin of 200 while on Prednisone and Imuran. She was on a relatively low dose of Prednisone for her arthritis not for her Crohn's - about 12.5 or 15 mg.

Anyway, she refused to go up on Prednisone, so her GI added Entocort (9 mg). 6 weeks later, she had scopes that despite the Imuran, Prednisone AND Entocort, showed ulcers and inflammation in her terminal ileum and cecum.

It was not severe inflammation, but considering she was on two steroids and Imuran, I was surprised they found anything at all!

The scope prompted us to try Imuran + Allopurinol and when that didn't work, she was put on a biologic.

Very similar to my case. I'm on high dose prednisone at the moment (40mg) and 100mg of imuran. My GI did say that it would take 8-16 weeks for the imuran to work (as pred is starting to lose its effectiveness.) Had a CT scan which was clear However my calprotectin result has actually pushed him to book me in for a capsule endoscopy so we can decide on whether i need to switch back on to biologics or not.

 

[willpwuk]

Yes I've had similarly low numbers which didn't worry my specialist but then an MRE came back with 30cm of inflammation. I think that may be unusual but as you see still possible.

I think I remember reading somewhere that if the disease is higher up the small bowel, low CP numbers can still mean disease. Mine is mostly beyond where a scope can see so that fits.

Where's yours usually?

I think i read the exact same thing somewhere actually (might have been on here lol.)

I've had crohn's at the end of my Ileum which was surgically removed but then it came back further up in the ileum (beyond scopes.) Which showed on MRI following treatment though CT scan was clear but GI did explain to me that all the treatment i'm on would make it very difficult to see active inflammation if it's minimal so i've been booked for a capsule endoscopy.

 

[crohnsinct]

Thank goodness for doctors who push to get the complete picture! Sounds like you are in great hands. Unfortunately, my girls had a doctor for years who ignored consistent cal pro results of 500.

Good luck with the pill cam. I hope it gives you answers and a clear path forward.

 

[Grant]

Last December my Calprotectin level was 1184. I felt absolutely terrible due to a enormous amount of stress. I had a good chat on the phone with my Specialist Nurse & in time I felt better & certainly the pain I was getting in the rectum gradually subsided to a level that's manageable.
I know for me the Calprotectin Test is far more accurate that standard CRP via blood test.
I think to answer the OP's question it all depends on if your circumstances can change like mine did, lower stress is all important for me.
Regards
Grant

 

[Lady Organic]

when did you start the prednisone? maybe you simply need more time to get to full remission as well. You still have many more weeks on pred if you are at 40mg right now and in the meantime, the Imuran should kick in.

 

[Anna's Bandit]

Are you all on a liquid only diet while your calprotectin is high ? Right now I am unable to eat solid food or soft foods and I still have watery diarrhea several times a day while on my liquid diet. I have been on my liquid diet for only 5 days, but this morning I had a dream and food was in my dream ! I am so hungry ! Going to see my Nurse Practitioner in one week for a "consultation." So now I am at home for a week, probably having dreams about food ?

 

[willpwuk]

Thank goodness for doctors who push to get the complete picture! Sounds like you are in great hands. Unfortunately, my girls had a doctor for years who ignored consistent cal pro results of 500.

Good luck with the pill cam. I hope it gives you answers and a clear path forward.

Ha, if you read my previous stories you'd understand why I'm so glad to be under great care now. I was fobbed off with IBS for 5 years, and never taken seriously. Ah, that's shocking. I would have thought that results like that would raise red flags. I hope your daughters are sorted now though!

 

[willpwuk]

when did you start the prednisone? maybe you simply need more time to get to full remission as well. You still have many more weeks on pred if you are at 40mg right now and in the meantime, the Imuran should kick in.

I've been on pred for a while now but i keep relapsing every time i go down to 20mg. Yeah you're probably right. They did say it would take time however the only thing imuran has done for me so far is made me feel constantly like i'm going to be sick lol

 

[willpwuk]

Are you all on a liquid only diet while your calprotectin is high ? Right now I am unable to eat solid food or soft foods and I still have watery diarrhea several times a day while on my liquid diet. I have been on my liquid diet for only 5 days, but this morning I had a dream and food was in my dream ! I am so hungry ! Going to see my Nurse Practitioner in one week for a "consultation." So now I am at home for a week, probably having dreams about food ?

I was on a liquid diet after my surgery for a while but no I'm on a low residue diet + fortisip atm.

 

[crohnsinct]

Are you all on a liquid only diet while your calprotectin is high ?

For my girls it depends on what is going on when their flares hit. They have done exclusive enteral nutrition about three different times and it works great for them. But they have also done steroids 4 different times. For example, my oldest is living in a Dom at college clear across the country. To deal with that flare, she knew there was no way she could easily do EEN so she opted for the steroids.

Good Luck at your appointment. I hope she has some good ideas for you.

 

[Grant]

Hello all. Up until last week I've not been on pred in any form for a while. And actually considering I'm in the very early stages of Stelara ( one infusion & one injection) I feel generally not too bad. But my last Calprotectin test came back @ 2882. I've had a Ultrasound that reported part of my bowel is enlarged. Now I've had so many problems in the general rectum area because of active Crohns for ages & I'm now on a course of Pred Suppositories which is helping with the discomfort.
But I'm obviously concerned @ a very high Calprotectin level & cant work out why I'm not in a lot of pain in my belly. Unless the test results are all about my rectum.
Oh well another hurdle to jump I guess.
Best Wishes
Grant