Update on Violet: RELAPSE

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imaboveitall

imaboveitall

Joined
Feb 9, 2012
Messages
968
Hi everyone,

After a CLEAR PILLCAM, clear scopes, on Jan 24, V has relapsed.
She was on BOTH Remicade and Imuran when this happened.
She was six weeks out from her last Remicade (Jan 21) when symptoms returned.
She is 4mos post d/c prednisone (d/c Nov)

She is steroid dependent. I cannot believe this shit.
Even the dual therapy couldn't hold her. What in the hell?
Plan is: continue Imuran :confused2:
Add Humira WEEKLY X3 then go to biweekly

It won't work, she's been on Humira (though not with an immunomodulator added) and on Remicade and on Remicade WITH Imuran and she still can't stay well.
 
Sounds like some similarities with us too. D doesn't have clear scopes, but has a lot of healing on her last MRE. Everything was actually clear in her small intestines at her last scope! Her symptoms aren't subsiding hence why we are doing the EN. I refuse for D to go back on Prednisone as we just finished Sunday. She is steroid dependent, being on it for 1.5 years, but the only way to change that is to stay off it for a while I am told, sometimes away from steroids for a year.

D is on the combo Humira & Methotrexate (with some prevacid on the side)and is still in massive pain, going 15x a day and has no energy and is barely on the acceptable weight percentile at 5th%. Nothing we are trying seems to be working to a manageable level to function.

We are also ordering blood work to determine the level of Humira in her system to determine if it is even doing anything, which could be one of the problems in the doc's opinion. Doc wanted to double up the Humira to once a week (now taking it biweekly) and I am not prepared to do that yet without confirming it even does anything for her.

We never did Remicade with Imuran or MTX though. D wasn't on Remicade long enough to allow us to try that. She had an allergic reaction that required hospitalization and has now built up antibodies to Remicade.

I do hope Humira+Imuran does the trick. I have met a few kids at SickKids that Humira & MTX has done great things for them. If I had asked around more I would have heard about Imuran, but since it wasn't the drug we were trying I never asked further.
 
Sorry to hear that! Really hope she gets better soon. Good luck with the Humira again
 
For what it's worth, my daughter started Humira again in January and doing a loading dose (4 shots at 0 weeks and 2 shots at 2 weeks and then weekly) really helped it kick in.That said, she's flaring now so no idea how long she'll be on it.
I've never heard for doing Humira 3 times a week, do you know how long she'll have to do that for?
Have you asked about the newer drugs like vedolizumab and Stelara?
Poor Violet, hope something kicks in soon!
 
Ugghh, Julie, so sorry to read this! :voodoo: :voodoo:

What symptoms are affecting V? Is there any possibility the symptoms are being brought on by scar tissue and not inflammation?

:ghug: :ghug:
 
Oh no so sorry to hear V is having issues. This is a bit where we are at as C is on MTX, remicade(15mg/kg so higher than adult dose) and infusions at 6 weeks. I hope the combo of humira and Imuran will get her back to remission.
 
SupportiveMom: Ack, that does sound like V. She was on pred for 18mos in total but got sick every time we weaned, hence the dual therapy. This sucks, doesn't it? Doc says he'll do Humira levels after 4th dose.

Maya142: Not 3X wk, once/wk for three weeks. He offered that OR loading dose, we chose that as last time she did loading dose and got zero result. Haven't talked about either of the two you mention, he has mentioned Cimzia only.

Tess, fatigue in the extreme (had to get her a wheelchair to go anywhere, as she cannot walk/stand for more than a few minutes, too weak) and calprotectin of over 600 (was normal in Feb) and joint pain.

Clash, I had no idea your boy was on a big dose/six week sched. She was on the standard 5mg/kg per 8wk. So you are also dealing with flare while on dual...I have no words. It just sucks is all I can say.

Patricia, yep, HACA (neg) and trough levels done twice and in PERFECT thera range for both Remicade and Imuran as of Feb. *sigh* She is just refractory as hell.
 
did she ever get benefit from remicade?

We are at 4 weeks remicade treatments following a period of obvious response and then decreased response. Next step will probably be doubling dose although we are checking HACA and trough levels prior to this treatment.

I have heard of some people using triple dosing of remicade too.
 
Patricia, no freaking benefit, she started it Dec 2012 and had zero, I mean zero improvement so in May 2013 when landed in hosp, IV steroids (worked like in a few HOURS) and Imuran were added and she got better right away. Also oral pred for months and months...May until Nov. Sure enough, take away her pred and she got sick again. So one may reasonably conclude that neither Remicade nor Imuran were/are helping; it was all steroid benefit.
 
If I wasn't so worried about the effects of the steroids I would throw all the other meds away & just live off that. At least you notice something! I wish it was that easy. Oh to dream... big hugs!
 
So sorry to hear this. Maybe consider a clinical trial? The SSI vaccine by Qu Biologics seems very promising, and I believe it is available in the US. Wishing you all much better times ahead.
 
Words can not describe ...
I am so very sorry
We saw a similar thing for DS with pred and Mtx .
It just does nothing at all for him.

Hope the humira gives some relief
 
You are never alone! That the great thing about this forum everyone is so supportive of each other. Its my definite go to place, most of the time before I talk to my own mother!
 
So sorry to hear this. Is she having pain along with her extreme fatigue? With the pill cam and the scopes being clean at the end of Jan (just 2 mos ago) could something else be causing the extreme fatigue? Sorry if this is a dumb question.
 
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Twiggy, thanks! Sounds like he had the hip necrosis associated with steroid use, also the vertebral fracture from osteoporotic changes secondary to steroid use. I wish the article said what drugs got him well...

BriansMon, God, so NOT a dumb question, it was the very question the doc and I raised and we did a hormone panel and ANA to see if it could be some other cause. Nope, just (HA..."just") Crohn's. :ymad:
 
Ugh I just ordered that test for when we are in the hospital next week. In a way I was hoping it could point to getting further answers... crud at least it would give you another direction to explore.
 
SupportiveMom, I went down every differential diagnoses path that made sense to pursue, any and all tests I requested were happily and readily run, (some repeatedly) in the end, it was all Crohn's. Remember this is an immune system disease, not a GI tract disease per se. So it manifests in all sorts of weird ways :(
 
I can relate to your frustration. My son got so discouraged...He'd say,"I don't want to try something new... it fails... add this, then add that, then change that, etc" It's mentally exhausting because you try to get your hopes up with each one. Poor Violet. I will send prayers your way. (And the word "Refractory" was used here in KC.. That sets in deep with the despair for these kids- I'll have to say, the term was never used once at Mayo. But maybe because the majority is refractory there! :() Hang in there, unfortunately we all have to have our warrior gear on at all times with this disease.
 
So sorry Violet (& YOU) are going through this. So hard to watch our kids not be able to just be kids. I just hate this wretched disease:(
Big hugs & prayers your way:ghug:
 
Feeling horrible, Maya, thanks for asking. Very weak, hip pain, mouth sores, radiating abd/lower back pain, pale.
Humira gets here tomorrow (mail order pharmacy) so we'll waste a few months with that only to end up on IV steroids again. I am psychic like that. :yfrown:
 
Ughh! I freakin' hate Crohns!! I hope she gets some relief soon! Sending hugs your way!
 
I'm so sorry to hear that. I know you aren't expecting Humira to help but I REALLY hope it will surprise you and Violet can go on with her life!
Are they talking about long-term options if Humira does not work?
 
Wishing it works this time.
Have they ruled other stuff out causing the EIM or is there gut inflammation as well?
I only ask since we spent years blaming DS 's extra stuff on his extreme allergy stuff including all his Gi stuff since that was what we knew and what his specialists knew.
Even our current Gi looked at him at the time and thought it was allergy related because his allergy stuff is so severe .

It wasn't until a year or two later that we went back to the same Gi to figure out what was really going on.
 
Yeah, MLP, I've investigated every obscure and not obscure differential I can think of, including masto, lupus, vasculitis, pituitary axis issues, cancer (yes I made her see an oncologist), adrenal insufficiency, Ehlers-Danlos and mito and she has seen specialists in: cardiology, endocrinology, rheumatology, neurology, hem/onc, gastroenterology plus her regular ped and all agree it is Crohn's plus dysauto. For awhile her a.m. cortisol was low but not low enough to be classed as Addison's, this last go round it was in the teens so that was a red herring.

Fecal cal was normal in Feb, over 600 two weeks ago so gut inflammation is assuredly there.

She is steroid dependent and refractory. That's just the sum of it. I don't know how she's ever going to have any kind of life.
 
Mega hugs to you and Violet, Julie. :ghug::ghug::ghug: My heart breaks for you so I hate to think what it is doing to you hun. :(

Thinking of you both and wishing you nothing but the best. :heart:

Dusty. xxx
 
Thanks, Dusty. I am kind of a mess at the moment emotionally. Poor V remains cheerful (on the surface, who knows what she goes through inside) though. Other than hating homebound school, has no complaints :confused2:
 
How could you not be Julie. :( :hug:

I hear you about Violet. I’m sure I don’t know how they do it hun. Is it their fighting and survival mechanism that kicks in? The press on and refusing to give up attitude? I don’t know but god damn these kids are resilient, courageous and awe inspiring. They astound us, make us so damned proud of them and make our hearts sing. They are fair dinkum the best and so it is little wonder that are our hearts ache and break with the knowing of all they have endured.

Dusty. :Karl:
 
Julie, big hugs for V and you. I am fighting the losing battle to stay positive myself and found my messages on here pretty curt unlike my normal positive self. We are so busy being strong for our kids there is no more energy to look after ourselves during these difficult times.

We have to get through this, there aren't any other options. Stixking together with everyone on this forum has helped me between the crying times with my sisters & mom. Feel free to PM me anytime. This too will pass... that all I keep telling myself.
 
Ha, SupportiveMom, me too, I used to post on many threads and felt I was being all helpful and shit, and now I'm a big downer but honestly I can't help it!

I think too the up and down nature of the disease's manifestations, being all excited when they respond to a drug for awhile, then crash, a therapist would say that is "crazy-making" and really screws with the ability to cope, as it is up, down, up, down, and trying drug after drug does the same, "ooh, maybe this'll work"...um, no, it won't, no way to gain equilibrium.
 
Have they talked about surgery at all? With the scopes being clean...I'm not sure where you think her crohns is causing the most problems. You may have posted it and I didn't see it.
As for the roller coaster ride with medicines... I agree that its messes with your mind. The patient and the parents. Its exhausting to get your hopes up and then crushed again. I think I remember you really liking your doctor but have you considered having someone else take a look?

I ask this with knowing you've covered everything.... Has she been tested for Mono? (The extreme exhaustion? and My daughter had mouth sores with Mono)
Excuse if this is dumb... just wanted to ask if you've tested for that. :)
 
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Sending hugs and positive thoughts your way. This forum is fabulous and we are here to support people through thick and thin or runny and formed.
Our children are heroes and you are a most fabulous advocate for your girl. Hang in there and think positive, at the end of the day that's the only thing we have control over.
X
 
Julie, I don't have much to add or suggest, just that you and V are in my thoughts. :ghug: You and V have always been so strong, I hate the thought that this flare is hitting so hard. You have been such a great advocate and so strongly persistent at finding the right treatment for V, that I have no doubt no stone will be left unturned. You will find a way to get her into remission, you just haven't hit on the right combo yet.

It is possible that humira will work but, if not, there are still other options to try... cimzia, stelara, tsybari and some of the more 'untraditional' or newer treatments - LDN, QuLogic's trial of SSI vaccine... I can truly imagine how scary it must seem when you feel you are running out of the more commonly used options but, there are still medications available that haven't been tried with V yet. Try to take strength from V - as Dusty said, our kids really are amazing and, when S was diagnosed and inpatient, it really was his strength that kept me from total panic.

Lots of hugs :ghug: :ghug: :ghug:
 
Maya, that link is sweeeet! I saved it to my favorites.

Jane and Nick, :lol:'d at "runny and formed" awesome

BriansMom, who the hell knows where it's affected as the pillcam and scopes both were largely clean in Jan. I suspect that her EIMs are worse than the actual gut itself is, remember this is an immune system condition, that affects the gut, not the other way round, even if the GI tract isn't so bad, the entire body is affected by the overaggressive immune system. Her small bowel's been a mess, (Oct 2012) and in Jan was well healed, prob won't do surgery without strictures/perforations etc. Yeah, mono was mentioned but no signs, no lymphadenopathy. How I wish *sigh* it was mono...

Her doc has offered more than once to arrange a consult at any IBD center of my choice, anywhere. He had Dario Sorrentino review her case just recently, also several docs in Canada and has presented her case at international conferences. No one has any better ideas. She was well though, when Sorrentino recommended she stay on Remicade so maybe he'll sing a different tune this next case conf.



Tess, thanks, I know there are the few drugs yet to try but I have so little faith. The Saint says he'll do whatever it takes to find a regimen that works for her.
 
I'm so so sorry for all V is going through. I hear you loud and clear on the med highs and eventual lows. I'm having a hard time accepting C's disease has progressed since his symptoms crop up so few and far between.

This sneaky disease just pisses me off and having niece in laws with refractory crohns just makes me hate the word refractory with a passion!

It is so good you have the Saint so firmly in your corner as that seems such a huge advantage to have someone fighting as hard as y'all are for better days! HUGS!
 
Hate this disease as well.
All last summer into fall DS had really EIM's enough so that all the docs were trying to figure out the way - fecal was only slightly elevated .
Then for some odd reason the EIM slowly went away as did the lower Gi stuff.
Gi had thrown a whole slew of odd stuff at it probiotics , creams etc...
But nothing seemed to fix it until it fixed on its own.

We still don't know what happened or why.
Just that suddenly humira was enough when for 6 months it hadn't been before .
That was 6 months ago .

Hope things go smoothly even if they can't figure out the why .
 
imaboveitall said:
Ha, SupportiveMom, me too, I used to post on many threads and felt I was being all helpful and shit, and now I'm a big downer but honestly I can't help it!

I think too the up and down nature of the disease's manifestations, being all excited when they respond to a drug for awhile, then crash, a therapist would say that is "crazy-making" and really screws with the ability to cope, as it is up, down, up, down, and trying drug after drug does the same, "ooh, maybe this'll work"...um, no, it won't, no way to gain equilibrium.
Click to expand...



Okay this is so me and you said it perfectly!!!! It's why I was on hiatus for awhile. It's just a nightmarish roller coaster sometimes.........

:ghug:

J.
 
Sorry to hear V is struggling, and you having to watch her suffer is horrible. Thinking of you both
 
my little penguin said:
Hate this disease as well.
All last summer into fall DS had really EIM's enough so that all the docs were trying to figure out the way - fecal was only slightly elevated .
Then for some odd reason the EIM slowly went away as did the lower Gi stuff.
Gi had thrown a whole slew of odd stuff at it probiotics , creams etc...
But nothing seemed to fix it until it fixed on its own.

We still don't know what happened or why.
Just that suddenly humira was enough when for 6 months it hadn't been before .
That was 6 months ago .
Click to expand...

This happened to DS as well. I like to credit the FODMAP diet but really it was likely just the waning of the disease process all on its own.
 
So super sorry to hear this! I have not been on the forum for a few days so didn't see this until now. How frustrating. I wish I had some answers or advice for you. Sending lots of hugs!
 

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