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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?!
 

crohnsinct

Well-known member
Most recent infusion T's cal pro is down to 226 without any intervention. Interesting and yes you read that number right. Funny that her and her sister are only 6 points away but according to T she is now winning. The things siblings could find to compete with :rolleyes: No ore from GI so more watching and waiting. Still feels and looks good.
 

crohnsinct

Well-known member
IKR MLP. But you know our GI. He doesn't scope or image easily. But I just keep thinking of Catherine's Sarah and think that T could find herself in the same position if we are not careful. Her next appointment is supposed to be inJune. That is the appointment he is going to talk about switching to Humira for convenience. I will bring up scopes and imaging then.
 

Maya142

Moderator
Staff member
I agree - the fact that small bowel disease can be silent makes it really scary...I also cannot stop thinking about Catherine's poor girl. Leaving T with simmering inflammation seems a bit nuts when you know the dosing of Remicade that does work for her - 7.5 mg/kg every 7 weeks! I would definitely push for imaging - she's had simmering inflammation for a long time now. I would be worried about strictures and other complications considering how sick her sister got due to years of simmering inflammation!!
Doing imaging before switching to Humira would make sense - so you have a baseline. Perhaps you could sell it to him that way?!
 

crohnsinct

Well-known member
Well T had her infusion 5 days early so closer to the 7 week mark this time and Calpro is 302. Looks like it has settled in the 250-300 range. Still looks and feels pretty good GI wise but is starting to complain of joint pain and that is usually and bit of an indicator for her. She has a Telehealth appointment early May. We will see what happens.
 
Sounds like the calprotectin has been elevated for long enough to be a concern. You know there's inflammation in there, and you want to make sure things are moving in the right direction. Perhaps an MRE and/or a colonoscopy would be in order to help you figure out whether things are getting better or worse? If they're not improving (and maybe it's already obvious they're not), I assume you'd be looking at more or different drugs to try.

I feel like in my son's case we kind of got stuck in a mediocre state for a long time where it wasn't clear whether things were getting better or worse, so I think it's important to figure that out and then try something different if improvement isn't happening.
 

Maya142

Moderator
Staff member
I'd also be worried about this long-term simmering inflammation. With small bowel disease, it could easily lead to scar tissue and then strictures. I would definitely push for 1) imaging so we know how bad the inflammation is and 2) more frequent Remicade infusions at a higher dose or a med change - she clearly does better on a higher dose. I would personally try to make Remicade work as long as possible and would try a higher dose since that's worked for her before, rather than switching to Humira or Stelara, for example. Either way, her GI needs to address the inflammation ASAP, otherwise she could end up with severe disease the way O did, due to simmering inflammation.

Honestly, I am really shocked that your GI is ok with her FCP being 250-300 for months at a time- my kiddo's just came back at 200 (it was 50 when it was last checked) and she has inflammation in her terminal ileum (and colon, but it's worse in her TI and that seems to be her problem spot) and based on her symptoms (severe diarrhea) her GI immediately wanted to escalate her dose of her biologic and is now trying to get it approved.
 

crohnsinct

Well-known member
T had her Telehealth today and shocker the GI said that it has been in the 300-400 range for too long and he is certain that if he scoped her he would see inflammation. She reports that she feels fine. He wants to increase dose back up to 7.5mg/kg Q6.

I am happy.

He also wants her to stay 100% SCD. He is a fan. T is about 80% SCD. She she comes with me to work at the shelter she gets treats like Dunkin, a burger (bun SCD illegal, as is the cheese and ketchup) or other treats from the shelter like cookies, grilled cheese etc.
 

crohnsinct

Well-known member
He doesn't check levels often. If cal pro is high he just assumes inflammation and they need more drug. She was at a pretty low dose so it was an easy and plausible assumption. I think maybe if she was at 10mg/kg Q4 he might have checked levels and antibodies before abandoning the drug.
 

crohnsinct

Well-known member
Interestingly, T's cal pro went down to 232 for the first infusion at 6 weeks. But the next infusion (which is the first one after the increased dose AND 6 weeks) was 452.

Things that make you say hmmm?

She feels fine. GI didn't send an email or note on the lab posting. She has a Telehealth visit on 7/31 so we will hear then if he is the least bit concerned about this cal pro.
 
I'd love to see how calpro changes on my kids every day for a month! Bet you feel the same...in theory anyway. Sometimes I rely oncalpro and sometimes mistrust it. Interested to hear what GI says about T's result.
 

my little penguin

Moderator
Staff member
Neither cal pro is ideal
Crohns patients should have a cal pro of 50 or less
That is the goal
Above 50 means inflammatory process is still going on
And possible damage
Numbers closer to 1000 are a bad flare
We all know reported symptoms don’t mean the inside is still good

please bring this up with the Gi
When were last scopes and imaging ??
 

crohnsinct

Well-known member
Yeah, everything I read about cal pro says >250 means subject to flare in next 6 months.

When we first met this guy he said he aims for under 100. Then as T crept up he kept redrawing the line...around 100...under 150...under 200.

I was getting antsy to say the least and really glad he acted back in May but honestly, dose increase and shortening the interval and she still almost doubled. Seems like a conversation starter to me.

Her last scope was January 2017...yeah, I know, I know....too long to go between scopes...this guy marches to the beat of a different drummer. He did say last time, "if I were to scope you, I would find inflammation". So he REALLY relies on cal pro. Just don't understand his lack of action. WE will see what he says on the 31st.
 

my little penguin

Moderator
Staff member
Scopes tell you amount of inflammation/extent of area affected and damage all things that can’t be known by just fecal cal
Add in for some folks over 200 inflammation is horrid when scoping
Other that number isn’t until 500

so push(I know ...) for scopes
 

Maya142

Moderator
Staff member
Hmmm I'd be worried about that trend - going up while on an increased dose and at a shorter interval. That's definitely not in the right direction!
I know T's Crohn's is mild compared to O's but given O's disease severity, I'm confused about his treatment strategy - clearly there is severe disease in the family, and I'd want to do everything possible to make sure she does not end up in O's shoes! Plus, even if you remove O from the situation, her FCP has been elevated for months and it did not respond well to the increased dose.

I know he isn't keen on scopes but what about checking her levels and checking for antibodies? She's been on Remicade a long time.

I would definitely ask about all this at her appt.
 

crohnsinct

Well-known member
T had her telehealth with GI today. He doesn't think SCD is helping her. He wants to act on the elevated calpro.

He gave her two choices. Clobber the beast with EEN, steroids or methotrexate OR increase Remicade to 10mg/kg Q4.

She chose EEN.

He said it would be "about" 6 weeks. We will pull a fecal calprotectin in a month to see if it worked. Another appointment in 2-3 months.

She asked about an NG tube and he said it might be hard to get her training on the tube given the pandemic and skeletal crew etc.. He is going to ask the nurses. The fellow suggested that specialty pharmacy might be able to provide the equipment and training.

Maybe this will calm things to the point that Remicade can maintain. Maybe once she is off and starts back to food her numbers go back up. Ahhhh the suspense of it all.

He didn't mention getting the formula through specialty pharmacy. Our old GI ordered everything for us but this guy didn't mention anything about that. Hmm. Looks like I have some phone calls to make on Monday.
 

my little penguin

Moderator
Staff member
Our formula never came from the specialty pharmacy or any pharmacy -insurance would not cover it that way
Ours only covers it through the durable equipment supplier as infusion supplies
Just saying
 

crohnsinct

Well-known member
T got her tube today. They set aside 2 hours for training and for her to practice. They helped cut the tape and then explained the procedure and had her do it first time. She put it right in. 10 seconds flat. A little gagging after but overall not bad. We were done in 20 minutes.

She is going to have to keep it in because they say our insurance only approved 5 tubes for a month. They also sent us 10FR which is huge! The nurse who came to explain the pump saw the tube and gasped. She said they should have at least given her an 8FR and went out and asked the nurse to give her one so when she changes the tube at the one week mark she can try that one instead. If she likes that one better the nurse from home pharmacy will order that size for her and also ask insurance to approve more so she can take the tube out if she wants to go somewhere with friends but really who is going anywhere these days? She does have senior sunrise tomorrow (First day of school the seniors hike up a hill and watch the sunrise...they do that the last day of school also). She would really like to go to that without the tube but doesn't want to waste the 8FR because then on Sunday she has to take the tube out for softball and would have to go back to the 10fr.

So now T doesn't even want to drink her 2 cans daily that she is supposed to drink. She wants everything to go through the tube and I can't say I blame her. So I am about to let her get 3 cans through the tube from 12-6. Then at 6 I will load her nightly 12 hour feed and tomorrow she can do 2 cans during the day and then go to 6 overnight.
 
Good for T! That's awesome that she could insert the tube on her own so quickly. You could probably get more tubes free (except for shipping costs) through the Oley Foundation, if insurance doesn't approve more. We offered a bunch for donation when E finished her EEN, and no one ever requested them because the Foundation had so many tubes on offer at that time.
 

crohnsinct

Well-known member
Oh wow! Thanks for the tip PDX....I just might try that given these 10's are so big. Poor T said her throat hurts now. I told her that will settle down after a day or so. Just wish she could take the darned tub out during the day and give her throat a rest.
 
OK--I've been thinking about this more, and I'm pretty sure that we also got just 5 ng-tubes a month, even when E was only using them at night, because they could be reused for a week. Does this sound familiar to anyone else? I think we rinsed it well after use, put it in the fridge, and then rinsed it well again before reinserting that night.
 

crohnsinct

Well-known member
Oh wow! That would be great to know....if it could be simply rinsed and reinserted the next night. T didn't enjoy having it indwelling all day and would much prefer taking it out during the day, having a rest and then just doing an overnight feed. If anyone else could comment that would be great. I did ask the nurses about this and they said they have never seen someone do this but to be fair, most of their tube kids are a lot younger and have other issues so they likely do 24/day feeds.
 
I agree with MLP--check with the groups she suggested. The guidelines may have changed since E used a tube.
 

Tesscorm

Moderator
Staff member
We also reused ours. Rinsed it well every morning and night. I can’t remember if I used any soap??

but i agree w MLP... less infection risk if you can get more supply.
 

Maya142

Moderator
Staff member
We reused our tube - we had a new tube every week, but not every night. We rinsed and washed her tube every morning. M inserted it every night.

10Fr is huge! M was on 6 Fr for her NG tube and 8Fr for her NJ tube. She hated the 8Fr, though she eventually got used to it. She had no issues with the 6Fr after the first week - she was sore for about a week.

Way to go T for agreeing to try a tube. It's a hard step and she is a trooper!! I'm so proud of her!
 

Maya142

Moderator
Staff member
How is T doing with the tube feeds CIC? Did they get you all the supplies - including a backpack? Much easier that dragging an IV pole around.

The Oley Foundation and Feeding Tube Awareness are two organizations that have a LOT of resources about tubes and tube feeding. Feeding Tube Awareness is a pediatric organization and they used to have a facebook page where they answered questions etc. it was really helpful - I can't remember what our issue was, but I did contact them and I remember them going out of their way to help.
 
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