Flare--ugh

[pdx]

E has been having Crohn's symptoms on and off for a few months, along with low iron, and her calprotection just came back in the 400's. We're going to get Remicade levels and iron levels at her infusion next week, and start a 3 month course of budesonide. She's also going in for an MRE in the next few weeks and will probably get an iron infusion.

What do you all think about increasing her Remicade at next week's infusion versus waiting to get the Remicade levels back first? She gets 500mg of Remicade every 6 weeks right now (8.5 mg/kg). If she went up to 600mg that would be 10 mg/kg.

Her doctor's inclination is to stay at the current dose until we get the levels results, but she said that she will go up to 600mg if we want to. I figure that we know that 500mg isn't enough, so why not go up now, rather than waiting another 6 weeks.

 

[crohnsinct]

Ugh! How frustrating...just when you thought you were hitting your stride. I am so sorry.

To go up or not to go up? IDK...do you really know that 500mg isn't enough or could this be a loss of response or antibodies building back up (am I remembering correctly that she had antibodies form in the past?). What was her last Remicade level?

I guess there could be an argument made for "why wait to treat her" but you are treating her with Budesonide so at least she won't tank. Also, then if she starts feeling better, you won't really know what to attribute it to, the Budesonide or the increase in Remicade.

If this is an antibody issue, is there a danger with treating her with even more med? MLP?

Gee IDK, I could go either way but might sit tight for this next infusion. The GI sounds like she is very on top of it and if levels come back ow, you could just move up the next infusion early enough to make sure that she doesn't run out this time and then adjust future infusions. Bob and weave...it's the name of the Crohn's game. GRR.

Has she been having symptoms consistently or is she just getting symptoms as she gets toward the end of the cycle? If she has symptoms as soon as right after infusion, that might point more toward loss of response or antibodies....although that's what we thought about O and it turned out that she just needs A LOT more Remicade than everyone thought.

Sorry...a lot of rambling and no solid vote. I trust you and sounds like the GI does also.

 

[Maya142]

I would also want to go up now vs. waiting another 6 weeks. Because chances are either she has low levels and then you would be fixing the problem, or she has antibodies and then, well, it may not help but it shouldn't hurt her.

If she has antibodies, then you may have to switch to a different biologic - Humira probably, since she did initially respond to anti-TNFs.

But I do also understand where your GI is coming from - if she has antibodies, then giving her extra Remicade won't help.

And you won't know if Entocort is helping or Remicade, which could confuse matters.

What about going up on the dose and holding off on Entocort for a few weeks? That would tell you whether she is responding to Remicade and if she starts to go south, you add Entocort or Prednisone.

Considering her FCP is up and she needs an iron infusion, I think I am also in the "why wait" camp.

But I am also very impatient .

Really sorry to hear she is flaring. Poor kiddo.

Also, just FYI, when my daughter had very low iron (Ferritin was 3 I think), it took 4-5 iron infusions to get her levels up.

 

[my little penguin]

We have increased based on symptoms alone more than a few times over the past 7 years
Either way Ds docs feel your going to try to keep a med as long as possible so
Increasing allowed Ds to stay on humira for over 5 years
I think we tested levels once
They were normal (I think not sure )
But still increased
And it worked
For a while

Remicade at the time he increased as well
His body was fighting it (blisters peeling skin rashes) from first infusion
His remicade levels were normal and no antibodies
But he still had a reaction
And had to stop

So in Ds case increasing helped
Just increased Stelara based on symptoms
No level tests

 

[my little penguin]

His docs theory is the current dose definitely isn’t working so your either going to stop and start a new drug taking months to build up
Or increase current med which may work
Less wait time

 

[crohnsinct]

One other word on levels being "normal" or what they call therapeutic range. I think the current therapeutic range is 4-7. O was at 4.8 and for a long while 5.6. Not therapeutic for her. Therapeutic is different for everyone. So it is possible that you get no antibodies and test within therapeutic range but it still won't mean loss of response. Could just mean your kid needs a higher level than others at this specific point in time...kida what MLP's doc does. I would always try to increase dose before dropping...look at what happened to O...looks like we may have recaptured response.

 

[Jelly loves Peanut butter]

Sorry to hear your daughter is not doing well. She will be in my prayers....hope she gets to feeling better soon!

 

[pdx]

Thanks, everyone--I really appreciate all your thoughts on this. We have an appt this week with her GI, so I get another chance to talk over all the options before making a decision.

Her Remicade level was 6.9 six months ago, with no antibodies, but she did have a low level of antibodies a year before that.

 

[pdx]

GI appt was this morning. We are going to increase Remicade to 550mg for Monday's infusion and also increase mtx from 15 to 20mg. GI suggested switching to mtx shots since absorption might not be great right now, but my daughter really really hates shots (even tiny painless ones), so we're going to stick with oral for now. Started budesonide yesterday.

Maya--I agree with you that in changing 3 things at once, we won't know exactly what is helping, but I'm OK with that. I think that all these treatments work synergistically (ie hopefully budesonide will reduce inflammation, so that more mtx is absorbed, which will raise the effectiveness of the Remicade), so I'm hoping the whole will be greater than the sum of the parts.

We'll still check Remicade levels on Monday, and then again after a few more infusions. CIC--Our GI mentioned that the Remicade level "goal" has been going up. She said she used to aim for levels of 2-3, and then it went up to 4-7, and now she's hearing of people who aim for double digit levels.

MRE is scheduled for Weds. Next week is spring break--doesn't that sound like a teenager's dream spring break? Infusion Monday, MRE Weds, and psychologist Friday... We'll have to be sure to do some extra fun things on the days in between!

 

[crohnsinct]

Sounds like a plan and none of those approaches are especially dangerous so totally doable. I hope they work!

IFX levels of 2-3?! Boy she is r eating way back. O was dx'd 6 years ago and it was 4-7 back then. I had heard it was up but hadn't heard double digits. Good to know!

MRE[/wiki2] Weds, and psychologist Friday... We'll have to be sure to do some extra fun things on the days in between!

Oddly YES it does sound like what my girls would prefer over missing school and extra curricular etc. My girls HATE MRE's so being able to do them when school is out without the stress of exams, homework and missing practice would be their choice. But yeah, maybe not exactly a dream

I am SURE you will make up for it! :thumleft:

 

[Maya142]

MRE is scheduled for Weds. Next week is spring break--doesn't that sound like a teenager's dream spring break? Infusion Monday, MRE Weds, and psychologist Friday... We'll have to be sure to do some extra fun things on the days in between!

My kiddo just had a spring break like that. 4 out of 5 days was appointments. And she is back home, just 1 week after spring break for another one :ybatty:.

Poor E . I hope she gets some rest and starts feeling better soon.

With MTX, she may have more side effects at 20 mg especially since it is oral MTX. So I would definitely have Zofran on hand.

Our rheumatologists will not even give oral MTX at 20 mg because it is absorbed much better if it is given via injection. My girls also had way more side effects on oral MTX so they definitely preferred the shots.

My older daughter just went up to 20 mg MTX from 15 mg. First injection is this Friday.

Tell E to hang in there!! I'm glad you're upping everything at once - hope that means she will feel better quickly!

 

[my little penguin]

FWiw Ds is on oral mtx at 20 mg
No issues at all
Injectable mtx makes him very sick and 25 mg injection is not tolerated at All.
That’s his max dose oral 20 mg period
His rhrumo will do 25 mg oral but has you split the sdose do not all at once

Good luck

 

[Maya142]

^That is definitely true - some kids tolerate oral MTX better and others injectable. My girls definitely tolerated the injection better. It really just varies and even if she does have more side effects at a higher dose there are some things you can do - up folic acid, give Zofran more often etc.

But in terms of absorption, it is better with the injection. There have been several studies that show that, especially above 15 mg.

Results Forty-seven patients completed the study. Systemic exposure of oral MTX plateaued at doses ≥15 mg/week. In contrast, SC MTX demonstrated a linear increase in systemic exposure that was greater than oral MTX at each dose. No unexpected AEs were noted for either formulation.

From a pharmacokinetic standpoint, at the same dosage, MTX SC has a significantly higher bioavailability with respect to the oral route of administration. This difference is even more pronounced for medium-to-high dosages (i.e., >15 mg/week).
MTX SC is a more flexible therapeutic option than MTX OR, with a greater potential in terms of dosage range. MTX OR shows a plateau effect for dosages higher than 15 mg/week, whilst MTX SC exhibits a linear dose-dependent increase in bioavailability up to high dosages (25 mg/week).
From a therapeutic standpoint, both clinical trials and real-life studies demonstrate that MTX SC is superior to MTX OR in terms of clinical efficacy (DAS28 and ACR response), either as first-line therapy in MTX-naive patients, or in MTX OR-experienced patients as switch therapy. Clinical benefit has been demonstrated in both early and long-standing disease.
MTX SC also shows a better tolerability profile with respect to gastrointestinal toxicity. Other side effects are similar between parenteral and oral routes.
Overall, MTX SC is characterized by higher bioavailability, greater clinical efficacy, and a better tolerability profile than MTX OR.

http://ard.bmj.com/content/early/2014/04/12/annrheumdis-2014-205228
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4406815/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4833794/

The data is mostly in RA or JIA right now, but it is thought to be true in IBD too - our GI rarely prescribes oral MTX unless it is just a low dose to prevent antibodies.

 

[pdx]

Oddly YES it does sound like what my girls would prefer over missing school and extra curricular etc. My girls HATE MRE's so being able to do them when school is out without the stress of exams, homework and missing practice would be their choice. But yeah, maybe not exactly a dream

Yeah, she actually chose to do the MRE during spring break, for just those reasons. But yes, not the dream vacation!

Maya--sorry that your daughter had a similarly medical spring break. How's she doing? I'm glad to hear that she's in school this semester, but I'm sure it's not always easy.

Thanks for the info about mtx. E already takes zofran every week before she takes her mtx, so we're set there. We may need to switch to injected mtx eventually, but I'm still going to try to put that off for as long as possible.

 

[pdx]

But in terms of absorption, it is better with the injection. There have been several studies that show that, especially above 15 mg.

That is very interesting--thanks for posting that study.

While it makes sense to me that injected mtx would be more effective than the same amount of oral mtx, the plateauing effect above 15mg of oral mtx is strange. Well, we will hope to be the exception to the rule, along with MLP's son.

 

[Maya142]

There are some videos of kids giving themselves the shot, if it comes to that. I hope she doesn't need to switch and I don't actually know if seeing videos would help her, but we know some kids who started injecting MTX by themselves at 7 or 8.

M started doing her own shots at 13.

The key is to get MTX with preservatives - that does not burn. And ice and Buzzy make it basically painless according to my older daughter. She doesn't bother with them anymore, but she has said that with Buzzy, sometimes she doesn't feel the poke at all.

M is doing ok...we are gearing up for another surgery over the summer - this one will probably be the most invasive one she's had so far. She is managing in school but barely. Her IBD is flaring but not too bad. Her AS is doing better, however, long-term inflammation has led to damage in some joints which has led us to surgery .

 

[pdx]

The key is to get MTX with preservatives - that does not burn. And ice and Buzzy make it basically painless according to my older daughter. She doesn't bother with them anymore, but she has said that with Buzzy, sometimes she doesn't feel the poke at all.

OK--that doesn't sound so bad. E got her flu shot with no tears or drama this year, so maybe it would be possible.

M is doing ok...we are gearing up for another surgery over the summer - this one will probably be the most invasive one she's had so far. She is managing in school but barely. Her IBD is flaring but not too bad. Her AS is doing better, however, long-term inflammation has led to damage in some joints which has led us to surgery .

So sorry to hear this. Hope that the surgery will help with her arthritis pain.

 

[pdx]

All the test results are back and they are mostly good.

Remicade level is 6.7, with no detectable antibodies. This is already pretty high, but maybe E just needs an even higher level. That's my hope, at least, because otherwise she may be losing response.

Iron levels are all back in the normal range after 2 months of oral supplementation. That's a decent sign that she's not dealing with a lot of small intestine inflammation. The low iron might be just due to her heavy periods, or it may be that she has a little inflammation that is reducing absorption, but not by too much.

She was a champ during the MRE, and they were able to get good images. It was clear except for a very short segment of residual wall-thickening and resulting narrowing just before the terminal ileum. All the "previously identified areas of active inflammation" had resolved.

Unrelated to Crohn's, they also saw a 4cm ovarian cyst on the MRE, which her GI didn't even mention in her e-mail to me. I just wrote her back to ask whether this is a potential problem, or whether cysts usually resolve on their own. Anyone have any experience with this?

So it seems like we're not dealing with a big flare, and hopefully all the medication adjustments will end it quickly. She does seem to be feeling better this week. We'll check calprotectin again after tapering off the budesonide in a few months.

 

[Maya142]

I hope the medication adjustments work! Sometimes you just need a higher level than Remicade, though I know hers is already within the normal range.

But in the worst case scenario, if Remicade fails, you will probably just have to try a new biologic. Probably Humira since she did respond to Remicade. But hopefully that won't be necessary.

And if it is, hopefully the new formulation of shots will be out!!

My daughter has had plenty of ovarian cysts found on MRIs. She has a lot of pelvic MRIs (usually one every year or two) to check her SI joint arthritis. We saw a gynecologist the first time (she was 15 or 16 then) who said it was absolutely normal, but she would do an ultrasound in a month to be sure.

She did it and the cyst was gone. There was a new cyst forming though - but just a teeny tiny one.

She's had 1 or 2 more show up on an MRI or MRE. No one has been concerned at all. I think M's cysts were 3 or 4 cm but I'm not entirely sure. I'll dig up the reports tomorrow and see how big hers were. I think if they are small cysts, you generally wait and watch.

I would ask your pediatrician if she needs to see a gynecologist.

 

[crohnsinct]

Good news!

The Remi level results were at her old dose and schedule right? So maybe the new dose/schedule will be able to hold her after the taper from budesonide.

FWIW our GI considers a calpro of 400 indolent inflammation so it is possible she would have been heading into a flare and the budesonide kicked it back and the increased Remi will take over. So those MRE results are very encouraging. Also, 6.7 is just at the top range of what has been the target level. That would not be considered high and as we are learning lately many kids (especially girls our GI tells us) require a higher therapeutic level.

Onward and upward!