Does high calprotectin result mean a flare?

That was almost my same result. The specialist declared the calprotectin showed, "active disease." Yet symptoms were well controlled at 10mg/kg Infliximab. A few months later the calpro returned to normal without uptick in symptoms, disease now termed "quiet", and a recent scope showed no inflammation. I hope this is lasting good news for both of us.

Cc,

My fc numbers are about that high. I've developed an obstruction which is slowly clearing. (I've been on the SCD diet and milk of magnesia for a week... Mostly using the broth and yogurt)

My GI thinks I'm going thru a mini flare that should resolve soon. If I hadn't had the obstruction he would call it mild inflammation and just keep his eye on it....even with the higher fc.

Hang in there.

CC, I am in the same situation. I get FC tested every 3 months on Rinvoq. My June 24 test was a 6 and my Sept 30 test was 275. He is already sending me labs to start Skyrizi and I don’t have any symptoms. I would never have guessed it was high. Only going 1-2 times a day, no blood and no pain. I am super upset since I don’t want to change meds but he said that number is too high for him to say Rinvoq is working. I messaged asking for a repeat FC but he doesn’t seem to think it will matter. He scheduled me for a Dec 11 scope.

CC, that is what I told my nurse! I said I need to milk Rinvoq for everything I can since we don’t have many medications that work. I don’t wanna waste it while I am okay. It feels so rushed. I know they are trying to avoid a hospital stay since I do end up hospitalized 100% of the time. This just feels like a lab mistake honestly. Hoping they will just satisfy my need of another test. If two in a row are high, I would feel better about switching.

So I finally had an appt with my GI (he never answered the messages in the portal about this -- I sent 3!). Today he said that unless the number goes over 250 and I don't have any symptoms he wouldn't do any further investigation. He said that IBD patients can have fluctuating FC. Don't know why the test says that <50 is normal.

I am a bit frustrated with this doc. He doesn't use the portal himself. Everything goes through the nurses and they relay things to him, he responds to the nurses and then they respond to me. That wouldn't be a big deal except that things can get lost in the translation which is what I suspect happened with this.

I had tried to get an earlier appt with him because he's now out of network with my insurance. I first sent a message and then I called too. I was told he didn't have any openings (this was almost 6 weeks ago) and that I could go on a waiting list. The way they do a waiting list is like the Hunger Games -- they send a mass text message to everyone on the list and whoever responds first gets the appt. I guess they took me off the list after the first one because I never got another text. I decided I wasn't going to respond anyway. I was only trying to get an earlier appt to save money. Other people were probably really sick and really needed an appt earlier if possible.

I asked the doc what I should do if I ever start flaring since he doesn't use the portal and his appts are so far out. He said to send a message to get stool tests ordered to check for infection and calprotectin. Then if no infection he would schedule a scope to see what was going on. I asked if I would be able to at least get rectal meds to help with the symptoms and he seems very reluctant to do anything until the scope. But he did say he won't let me keep getting sicker. Why do you have to scope to confirm a flare if FC is high and symptoms are clearly a flare? Sounds like corporate money making protocol. I hope I never have to go through all of that. It stresses me just thinking of wasting all that time until I can get something to help.

They wanted you to wait 6 months with those symptoms? What did you do?

The doc is out of network right now, but I got a Continuity of Care approved for the rest of the year so I can still get my infusions. I will be switching to Medicare Jan 1 and he's in network for that. There are other docs in the practice and I asked him if I should switch to one of them since he's so busy (not knocking him for that -- he has a lot on his plate) he said I could if I wanted to, but they are all really busy and he's the IBD expert there so they all consult with him anyway. It's fine for now. It might be a problem if I ever flare, but I am hopeful that won't happen

That sounds awful! Glad you went to the other hospital!