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Sibling being evaluated

Maya142

Moderator
Staff member
Really hope he will address T's inflammation SOON. We don't want her to end up like O!!
Remind me, she's on Remicade 7.5 mg/kg every 7 weeks, right? So enough room to go up.

462 is high for small bowel disease, but given that O is so sick and T has an appt. coming up, I'll play nice till the appt.
 

crohnsinct

Well-known member
Yep 7.5mg/kg Q7. I think her sweet spot is 7.5mg/kg q6 because once we had to infuse a week early because of a trip and her cal pro went down to 160's that time. Not ideal but a lot better.
 
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crohnsinct

Well-known member
Well, without any intervention what so ever T's latest cal pro came back at 226. She feels fine and has gained a little weight. It could be because of the weight lifting she is doing for softball but I will take it.

Guess these docs actually know what they are doing after all by not freaking out and playing the watching game. Wish I was better at that game.

Yeah I know 226 is still not the greatest but it is a lot better than the 300 and 400's she has been getting so I will wait and see if she is on a downward trend or still bouncing around before I freak out.
 

crohnsinct

Well-known member
T had her check in appointment today. Her cal pro is 65! Lowest it has ever been in a long while. Got that result with no change in therapy whatsoever! Now fair disclosure, we did let up on her diet some over spring and summer given softball and mommy the diet drill sergeant being in the hospital and preoccupied with O. In August we doubled down our WFPB eating efforts. IDK if that has anything to do with it though.

He decided to reduce her dose back down to 5mg and extend her interval back out to 8 weeks. Personally, I wouldn't do that. Not given just one semi normal cal pro. I would at least wait for two. Plus, last time he did that her cal pro shot right back up. But if you have read O's thread you will know the mood I am in. Just going to trust him on this. She is doing great. So let's give it a shot. Her psoriasis is flaring something fierce so maybe this will help as her psoriasis is Remicade induced. He is very good about monitoring and will adjust if need be.

In other news, he is thinking about when she goes to college. He asked her if she would like to switch to an injectable drug to make it easier in college re: finding an infusion center etc. I told him home infusions make that a non issue and that I wasn't comfortable rocking the boat especially given what O experienced with her med change. However, she is in remission and O wasn't. Her disease is mild. She was VERY interested in it. We will discuss at her next appointment in June.
 
That's great that her cal pro is so low.

I know you're not big on methotrexate, but it worked wonders for my daughter's remicade-induced psoriasis; it completely resolved when she went back on mtx, and her dose is pretty low--12.5 mg/week. (I wonder if an even lower dose would have worked for the psoriasis. We keep it at that level because it also seems to help therapeutically with E's Crohn's.)
 

crohnsinct

Well-known member
Aw thanks but actually T got the psoriasis while on MTX. Same with O. When we took them off it made no difference. Actually now that I think of it taking O off Remicade made no difference with hers either. Tacrolimus didn't help but steroids calmed it down a good amount.

Kills me that some drugs work for some and not others.
 
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Maya142

Moderator
Staff member
Just catching up on this thread - sounds like both girls have psoriasis that's not Remicade induced. How are T's joints these days? I remember her having bad arthralgia early on and I know she's not one to complain, but obviously with psoriasis, you want to watch her joints and make sure there are no signs of arthritis.

I agree with you that he shouldn't have moved her Remicade - she's had what, like 4 high FCPs? Which makes this low one an aberration - I would wait till she's had a few normal results.

I also agree with you on not moving to a different biologic when Remicade is working...especially since allergic reactions can happen when you re-try Remicade (although not all kids have them - both mine did not). But I can see why an injectable biologic would be a draw for T - both my girls MUCH prefer injections - 10 seconds and you're done!

But at both my daughter's schools, we would have had to ship the drug to the health center, since the mail room takes time to process packages and of course, these meds are shipped on ice. My girls went to school close to home, so they were home enough during the first year or two of college that we shipped the drugs to home. Once they moved to off-campus housing it became a non-issue.

But if T goes to a school that requires freshmen to be in dorms, and kids mostly live on campus, then I would argue that a home infusion is almost easier than setting up the delivery of the shot and going to the health center to get it 😉 - with an infusion, it all comes to you!
 

crohnsinct

Well-known member
Haven't updated here in a while.

For T's next infusion we were able to extend out to the 8 weeks and her cal pro went up to the 260's. This was with 7.5mg/kg Q8. So next infusion was a 5mg and 8 weeks later her cal pro is 433. Who didn't see that coming?

Pretty sure we are going to sit and wait and watch as the last time that is what we did and cal pro went down on it's own. But not a good sign given she is also on strict SCD.
 

crohnsinct

Well-known member
She has TI disease and her only symptoms ever are loss of weight, pain, nausea and wonky tummy. She is notoriously stoic and won't utter a complaint until it is really late in the game. She has said about a half dozen times that her stomachs off. But it was on and off and the minute I turn to look at her she plays it off.

Long way of saying...Who Knows?!
 
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