Entocort and Fecal Calprotectin

[BoyMama2000]

Hi Everyone,

We got great news today. My son has been on 9mg Entocort for 6 weeks. His fecal calprotectin number in early December on early March were in the 690 range. After 6 weeks, it is now 106! We see his doctor on June 3rd. He wants him to stay at 9mg until that time and will then likely start to taper but wanted to see him first.

I was wondering if any of you use fecal calprotectin to monitor your disease and how often we should get this re-measured during the taper. He has no D or bleeding. His only symptom was lack of growth at diagnosis so we can't really monitor with symptoms. I am hoping we can use this stool test to monitor him so we can add Entocort back into his med routine as soon as it goes up significantly. He is on pentasa and will stay on that continuously.

He did develop a perianal abscess that kept coming back after drainage because it would close on the outside. After a drain was placed and we are now packing, he is almost healed. It would be great if we could monitor this and alter his meds before he flares and increases his chance of getting another abscess.

Thanks for your time.

 

[Clash]

Until we get in the normal range I think my son's is set every three months but that is with my urging, the doctor may have been comfortable with every six month unless C started experiencing physical symptoms since lab work doesn't always show an accurate pic of what is going on with him.

 

[BoyMama2000]

All of my son's other blood work is always normal. I was hoping to get it done every month while they wean him off Entocort. This way we know how he is really doing and then if all goes well, continue monthly for a while before looking every 3 months. Is this an expensive test. It really seems like the only noninvasive way we can monitor his illness and is so easy to do. Keep on urging your son's doctor to continue monitoring. I am very excited that we may finally have something simple to learn about what is really going on inside of him!

 

[Clash]

Since C is on Remicade and gets it every 6 weeks, FC monthly might be overkill for us. He actually has the test every 10th week since it takes a week or two for it to come back, so every other infusion we have the results.

For us, it isn't covered by insurance since it isn't a standard test with IBD(although it should be!) I think it costs us 140.00(? can't remember exactly may be 240.00)

 

[BoyMama2000]

Thanks for the information. We have been covered so far. If they won't cover it that often, I would be willing to pay for a while because it really does seem to give us the information we need. I think this is becoming a better and better tool for IBD and hope your insurance covers it soon!

 

[Clash]

Yeah, the GI seems to think it won't be long before it is considered a standard of care in IBD...I hope so!

 

[BoyMama2000]

Me too! My general doctor sent me to a GI once my son was diagnosed with Crohns because I had been diagnosed with irritable bowel years ago and he felt I now needed a colonoscopy given my son's diagnosis. My colonsoscopy was normal including the ileum. Perhaps I still could have waited until 50 and just had the FCP done instead. All the research is pointing towards making this a standard just as your GI says!