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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.
 
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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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.
 
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.)
 
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.
 
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!
 
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.
 
This isn't surprising. You predicted this might happen. She obviously does well on the 7.5 mg dosage. Has she been exhibiting any other symptoms?
 
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?!
 
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.
 
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.
 
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?!
 
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.
 
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.
 
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.
 
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.
 
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.
 
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 ??
 
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.
 
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
 
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.
 
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.
 
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
 
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.
 
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.
 
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.
 
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.
 
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!
 
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.
 
Lordy! Did I really never update this thread? T finished up her EEN nicely. The GI weirdly let her go back to eating whatever she wanted. Calpro bounced around in the 200's we didn't change anything and what do you know this last time it was 117!

So skipping along nicely and looking forward to graduation and college.

Just thought I would put this out there as another view of Crohns as sometimes we only see the bad.
 
I think 7.5 every 6 weeks....hear that new parents?! You can actually get to a place where you aren't really even sure what your kid's dose is because they are doing so well you don't have to keep such close tabs on that stuff!

I actually know it is every 6 weeks....at least that much I know. And I am relatively sure we aren't at 10mg/kg again because I distinctly remember talking about it and er choosing to do EEN rather than increasing Remicade.
 
So glad to hear she is doing well. That's exactly how my daughter felt when she started using an NG tube - she never wanted to drink formula again.

I can't believe she's a senior! Wow! I feel like she just started high school.
 
Well T's calpro crept back up to 279 and since she has small bowel disease the GI and fellow are asking her to retest in two weeks and if over 150 we have to change something. They asked her to do EEN again and she agreed but they said she could do only 4 weeks this time because she is a quick responder. They said that she might be one of those patients who every now and then just needs an EEN tune up. I don't agree with this approach. I think it is pointless to allow inflammation to keep creeping in and then do EEN and after it is over just eat normal and watch the inflammation grow again. What the point in that? But GI just keeps saying the only other choice is Remicade every 4 weeks or add Budesonide and you don't want that....who says?

She isn't symptomatic. Lost a little weight but leveled off and can't be too sure that isn't associated with softball. Was nauseous ad had some pain a few nights but that also could be anything. She is fine now.

See you all in two weeks.
 
Have you checked Remicade levels recently? I'd want to do that before changing or adding anything, even EEN. What's her current dose? Isn't it 5 or 7.5 mg/kg every 6 weeks? She could go up to 10 mg/kg every 6 weeks before needing to jump to every 4 weeks.
 
Good point PDX! This guy doesn't tend to check levels, IDK why. He also doesn't scope often enough in my opinion.

He did happen to say that he sees better response with shorter intervals than with increased dosage so he always tries that first.

I will ask about checking levels.
 
I agree - I don't think putting her on EEN every other month or 2 or 3 is sustainable. She may be willing to do it one or two more times, but it's tough!! Even with a tube.

Plus you're right that all the inflammation and healing -that whole cycle leads to scar tissue, based on what our adult GI has said.

I think the bigger issue is that there is chronic inflammation and we have no idea what her Remi level is, even on 7.5 mg/kg. She may need 10 mg/kg. We don't know where inflammation, since she hasn't had scopes for a while. And we don't really know how much Remicade is controlling the Crohn's or what kind of damage there is, especially since she has small bowel disease which can be sneaky.

But GI just keeps saying the only other choice is Remicade every 4 weeks or add Budesonide and you don't want that....who says?
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T is having infusions every 6 weeks, right? And your GI prefers to up frequency, then dose? So why is 4 weeks so bad - surely it's less inconvenient that not having food for 4-6 weeks. She has home infusions right now, right? I guess I don't get why it's such a big deal.

And Budesonide - he's happy to give it to O and then tells T "you don't want that" - what does that mean??!
 
@Maya142 My point exactly with this guy. He says all these things are to be avoided but then has her sister on all of it and more.

She is on 7.5mg/kg Q6.

Her mid cycle calpro came back at 89! So she can avoid EEN for now. But bless her heart, the smarty pants has been listening all these years. She says she wants another cal pro at infusion because what if she is burning through the Remicade at the end and that is what increases her cal pro. At that point just move infusions to 5 weeks or 4.

She is going to ask GI if she can get another calpro.

I will keep you posted.
 
Been a while. Thought I would update.

The April 29th calpro was right back up at 249. No change in therapy.
Something happened and she missed getting one in June.
Insurance made us switch to every 8 weeks. Gi increased dose to 10mg/kg.
August 12 calpro 540. Gi decided since she was starting college not to torture her in her first semester with EEN and just do a repeat test in two weeks. Well of course it was 50 because she had her infusion on 8/12.
Next infusion no calpro because she had just had one 2 weeks prior.
December 9th calpro 573 - no comment from GI
February 2 calpro 840 - one week went by no comment from GI. I wrote to him and basically told him to wake up. He greedier infusion schedule needs to be reduced. He wrote an appeal for every 4 weeks. We are waiting to see what insurance decides.

She feels o.k.. She says maybe a little increase in abdominal pain. Her H&H tanked, her CRP is at max of 10 and she is usually consistently under 1, 3 at the highest. No clue on weight.
 
Poor kiddo - I hope insurance will approve every 4 weeks SOON. She clearly has demonstrated she needs it!! And way to go CIC for getting her GI to wake up...you would think with what her sister has gone through, he'd be extra vigilant with T :rolleyes:.
 
Hmmm why do you say that? The only reason I worry is if she was running down to zero on her levels and building antibodies. But every 6 weeks was working until insurance screwed us up so I am really hoping that going back down to every 4 will recapture response.

IDK about his plan but our plan is to transfer her care when she gets home from school. She is tired of the kiddie hospital and would like adult care but she is also peeved that he didn't catch this sooner and mad at his treatment of her sister. We will transfer her care to either a hospital by her school or the "other" major hospital by us. We didn't like their pediatric IBD center but I have heard good things about their adult care.
 
Agree - we have seen spacing of dosing have a big impact on Ds
Insurance did similar and spaced out his Stelara to “prove” he would get sicker
He did
Doc appealed
Took a few months at the higher frequency (which he was in before for years prior to proving ) and he was fine again

crohnsinct good luck with insurance
I know ours was a battle
 
I don't think it's going to work because she's already had a significant dose increase, and yet her calprotectin has gone up substantially since. Not good! I wonder how the inflammation is looking on the inside.
 
@Pangolin actually not really a dose increase because they moved her out from every 6 or 7 (I forget) to every 10 weeks. That's why he had to increase dose to 10mg but maybe you are right…Q7 at 7.5,g/kg is likely equivalent to Q8 at 10mg/kg. And even at Q7 her fecal cal was creeping up. It's been 7 years so sounds about right. I am guessing Humira would be next but maybe Stelara given the complete lack of any colon involvement. But last scope was early 2017 so who knows what is going on in there these days.
 
So she hasn't been on 10mg/kg 4 weeks yet which actually might make all the difference. I don't think Remicade is a lost cause yet. I think the dose increase will make the difference.
 
Her last scope was in 2017? That's quite a while ago. Does her current GI have any plans for scoping when she is home next? Though an adult GI will probably want to scope her when you switch since it's been close to 5 years. I'm glad she is switching.

In terms of increasing frequency, it has made a huge difference to my daughter for Remicade, Humira, Cimzia, Simponi...basically every biologic she has been on. For Remicade, she's always needed it between every 4-6 weeks.

I hope it works for her, but it's good to know she has other options like Humira and Stelara. There is also another IL-23 inhibitor that has been filed for approval for Crohn's and should be approved some time later this year. It's supposed to be magic for psoriasis as well as IBD. T does have psoriasis, right? Or am I getting confused?
 
Sorry to say but the calprotectin level is very high for only small bowel involvement. You need a urgent MRE.
 
Any news on insurance approving every 4 weeks?
I vote for scopes with the MRE...it's very possible she has developed colonic disease in the last 4-5 years.
 
They submitted for approval for every 4 weeks and received it but she has to switch to bio similar Inflectra. Our current infusion provider doesn't provide Inflectra so she has to switch over to another agency and the new agency needs to submit for their own approval so it will likely be 6 weeks by the time this all gets straightened out.
 
T had her first 4 week infusion of Inflectra this week (insurance issues) and got calpro done right before. 158! Her last infusion 4 weeks prior was the increase to 10mg/kg. So just the dose increase did that! I am hoping that as we consistently infuse every 4 weeks that calpro will continue to fall. But that was quite a decrease and I am happy.

She comes home soon so hopefully no hiccups moving her infusion to a local center.
 
Well T's calpro continued to climb through the summer reaching as high as 500's. But without any intervention went down to 150. However it is now consistently elevated above 300 and most recently 500. She is at 10mg/kg Q4 and her Remicade level is 22 with no antibodies. It looks like she has lost response. She is scheduled for scope right before Christmas. Her GI proposed a switch to Stelara pending scope results but she would rather try another course of EEN to see if knocking down the inflammation helps keep Remicade on board longer.

She wants to do this rather than abandon Remicade because she saw what her sister went through and she doesn't want to risk no response to Stelar in the spring as that is her softball season.

Isn't it great when they are legally adults and can make decisions themselves? I am actually pretty impressed with her maturity and her involvement with her disease process and management.

Not so sure EEN through Christmas and the break and going back to college will still be appealing come December so maybe we have a drug switch coming our way.
 
Glad she is getting involved! But even if she does manage EEN and it gets inflammation down temporarily, will Remicade keep it that way? Honestly, considering her levels are high and she has no antibodies, to me it seems like she needs to switch biologics. She has psoriasis too, right? So Stelara might be a good choice.
 
I'm sorry to hear about all the ups and downs still. 🥺
Grace tried Stelara and that might be a good fit for your kiddo.
I can't believe how old the kids are getting.
 
Oh guys….adult kids are so much fun. Especially when they sort of know what they are talking about.

So now it seems little miss T's softball team is going to South Africa on a trip of a lifetime next January (2024). She wants to go but some of the vaccines are live. So she has a plan. She knows that her scopes will show inflammation. Her calpro is still in the 500 range, CRP is elevated for her, tanking H&H etc. So now she says if the GI asks her to switch biologics she will agree BUT she wants to do EEN for 8 or so weeks so Remicade can wash out and then get her live vaccines and then start Stelara.

Logically sounds like a plan not so sure medically. Plus even logistic will prove difficult because she is only home for 3 weeks for winter break so where would she get her Stelara infusion in 8 weeks?

This kid is a crack up.
 
Hmm…we had to delay meds for 3 months when M got the chicken pox vaccine, if I’m remembering correctly.
Doesn’t T get infusions at school anyway (well, I mean home infusions in her dorm)? Could Stelara be done that way?
 
Maya142 said:
Hmm…we had to delay meds for 3 months when M got the chicken pox vaccine, if I’m remembering correctly.
Doesn’t T get infusions at school anyway (well, I mean home infusions in her dorm)? Could Stelara be done that way?
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Good point @Maya142 I forgot about home infusions. We will have to see if her provider does Stelara. I know we had trouble when switching from Remicade to Entyvio for O and since Stelara is just loading dose infusion IDK if any of the companies bother with it.
 
Scope done yesterday. TI had ulcers, Exudate and friability. Sounds like mild disease but on Remicade Q4 and 10mg/kg that wasn’t great news. Her colon was pristine so disease hasn’t spread. We are not going to do an MRI to look at duodenum because the findings already mean a change in treatment so we are going to wait until it is time to assess the new treatment.

Endoscopist (who knows us rather well) presented the pics and said but we have to wait for biopsies which is another way to say “GI is on vacation so you can discuss in January”.

Her appointment is 1/6. Meanwhile I will try to find a travel doc who can tell us exactly which vaccines she will need to go to South Africa so she can present her plan to GI.

Poor kid doesn’t want to drop Remicade because she is traumatized from watching her sister drop a drug sorta working only to find nothing else to work.
 
Remind her that everyone is different! My older daughter worries a lot - about her younger sister and the severity of her disease (she feels very guilty that hers is not as bad) but also about developing severe disease herself. Hers is moderate currently. She has switched biologics multiple times, very successfully. She has done well on combinations that just weren't enough for M - such as Simponi and MTX, Cosentyx + Arava, Taltz + MTX. I know it's really hard, but she should try not to compare.

And she should also remember that there was a long time O was on Remicade where her disease was out of control and not one, but TWO GIs didn't do anything. And so it got worse and worse. That's exactly what we don't want to happen to T!! She should switch before it's really severe. I remember O was filling the toilet with blood and was being told her symptoms were due to stress :rolleyes: - absolutely ridiculous.

She is maxed out on Remicade, so I do think Stelara makes sense, especially since she has psoriasis too. If she can't have the infusion as a home infusion, could she come home for a weekend for it?

As for vaccines, I believe Typhoid is not a live vaccine - my girls have had it. Not sure what else she'd need.
 
Oh my! I never let you guys know what transpired on 1/6. Well, the TI looks a lot worse than how she feels. Also a lot worse than her labs look. So she is a tricky one and her GI finally admits that she is one he will have to have scoped more often.

He presented her with switching to Stelara or adding methotrexate to the Remicade. He really didn't think they would get much bang for their buck trying EEN again, although she was willing.

He said trying Stelara after failing a previous biologic is only successful in 46% of cases so about 50%.

She chose to add Methotrexate. She is doing pills.

She is doing ok with it. First calpro returned down a little. She forgot the second calpro. Third one handed in earlier this week.

She will have scopes when she gets home from college probably some time in June when I return home from O's surgery.
That's it. A nice non dramatic Crohn's update.
 
SO glad she's doing well on Remicade and MTX. Just out of curiosity, did your GI mention Skyrizi as an option? I read some studies that showed that it did better in trials than Stelara...I know she's with a pediatric GI and it's only approved for adults, but since she's over 18, could that be an option if MTX fails?
 
Yeah, I feel like it would be a good option for T even though her disease has read into the colon it was quiescent at last scopes.
 
Trying to remember what my scope showed pre-meds I remember they said patches of Crohn’s in 4 places so I think at least some must have been large intestine as they had already chopped out the terminal ileum and a good chunk of whatever was nearby
 
T's calpro posted and it is 300. So since she added methotrexate to the Remicade she dropped from 500 to 400 and has sat at 300 the last two cal pro's. Her calpro at scopes when they found her TI a mess was 400 so 300 isn't that great especially considering the variability in the test.

I don't think we will change much of anything for now because she will be home in June and plans are for scopes then anyway. Then we decide. I smell a therapy switch coming.
 
You could consider upping her MTX - if she's on 15 mg, she does have room to go up. 25 mg is standard in rheumatology - 1 mL. If I am remembering correctly, she's on pills right? So that decreases the bioavailability further, so she's definitely not actually absorbing 15 mg.

If you switch to the shot at 25 mg, I wonder if it might be enough to control the flare.

It does feel like med change time though...
 
That's uninteresting point @Maya142 she is just at the 12 weeks now so it should have kicked in by now. I wonder if increasing it would help. She has her appointment with the GI tomorrow. The first one she is going to all alone. The past two, I sat in the room while she was on zoom with him but I wasn't on camera, nor was I allowed to talk. I just observed. She promises to take copious notes and check in with me right after.
 
T went to her appointment by herself. I didn't even get to listen. So I am giving you the extreme cliff notes that I got.

Basically the GI said she needs to switch to Risankinumab. She asked if they could please wait until she is done with school as she feels the stres of softball season. and the semester wrapping up and her not eating 100% well might be a contributing factor. Plus, if Skyrizi doesn't kick in fast enough, she didn't want to be dealing with a huge flare during finals etc. He obliged.

He also said, if her calpro is still at this level then he won't need a scope. He knows what he will find. The calpro is enough to make him want to switch therapy.

She mentioned something about doing EEN through the summer to help Risankinumab take hold but not sure if that is because it has a long onset of action like Stelara or what. Good thing no one on the Ole site took me up on my offer of the extra tube supplies we have hanging out here:ROFLMAO:
 
T is home. Most recent calpro in end of April is 370 so increasing. The girls' pediatric GI has decided to go 100% into research and stop his one day a week in clinic. T got moved to a new young doctor who just joined the hospital. Of course I checked him out. He seems good. She meets with him in July. I hope she can make it through the next two months and wish she had an appointment sooner so she could start Rizankinumab sooner but ce la vie.
 

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