What's after Humira???

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Brian'sMom

Brian'sMom

Joined
Dec 5, 2010
Messages
1,261
Location
Midwest
Well, night feeding is going great. Up to 74 lbs. He's feeling great and looks great. Have seen tinge of blood in stool...but only going 2 times a day really. And he says he's not cramping. But labs came back. Sed went from 27 to 29. But crp went from 1.1 to 2.6. What the heck?!

Humira isn't getting it done...adding methotrexate brought numbers down only for one month. No antibodies to Humira. Now what? She's talked the last visit or 2 about changing to Cimzia. Is that any good? I'm just so worn out with this.
 
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Cimzia is "suppose" to work closer to remicade than humira from the little I have read but it is not approved for children. But I havent seen anything like an official study.:stinks:
I think its more what works for one may not work for another sorta thing.

WE have not been told what the next step would be after humira.
DS has his scope next week to figure out the what is going on plan.:ybatty:
DS's sed rate also went up it was 23 then down to 19 so still much higher than his "norm" of 10.


Glad he is gaining weight - thats good.:dance:

I hope Cimizia is the golden ticket for him.
I hear you on being "tired" for it all.:hug:
 
I'm thinking about having sed and crp retested. He was having loose stools last week and it cleared up Sunday. Maybe he had a bug... Seems like if crp was going up a whole point then the sed would go up much more than it did. That seems like the one that raises quickly.
He's feeling great. I know he'd be so surprised that his numbers were that. Usually when crp's been in the 2's he's had cramps. And the highest he's ever been (and was in A LOT of pain) was 3.6...

MLP, keep us posted on your son's scopes. At least his sed went down. 19 looks pretty good (well, to us)
 
Crp tends to reflect the short term - I think 24 hours or so .
Sed rate is more of a longer term thing.
DS has had a consistent sed rate of 10 since rate after dx so that is why the Gi is concerned in his case especially with all the other stuff he has going on.

When do find out about the cimizia ?
 
A sed rate of 27 and 29 are basically the same. I wouldn't get excited that it is going up until I saw a bigger increase than that or a trend.
 
MLP, we have our regular appt this Wednesday.

Xmdmom and MLP, so you both wouldn't get excited over crp going from 1.2 to 2.6 since its short term? It makes sense... that sed shows more 'long term' and it didn't change much
 
If your son is feeling great, it seems better to stay as things are. Just wondering if he's had a faecal calprotectin done recently? If the blood results are only going up a little bit, then maybe you could see how bad the inflammation is with a calprotectin. That's the only test that ever shows anything for my son.
 
CRP is a fast reflector of inflammation and response to treatment.

It is good to hear that Brian is gaining weight and looking well. :) But a such a shame that some things don't seem to be reflecting that. :ghug:

I see his Humira is at 10 day intervals but at one point was weekly. Is it not feasible to pull the regime back to weekly and see if that helps?

Dusty. xxx
 
Sascot, our clinic doesn't do fecal cal they do a test called lactoferin. I keep asking to have it done. But then no orders for it. I'm going to push on wednesday. I want to know what is going on with his intestines.

Dusty, I asked about going back to weekly. Our gi is adamant about not doing that. While on weekly he got a stomach virus, c diff, and the flu all in short period. She thinks its too much for him.

I was wondering last night, what about entocort...or uceris (our gi hasn't heard of uceris) or something to get things back in order. Obviously the Humira is doing something because life was hell before it
 
March 2013. Saw problems in rectum area and a part of transverse colon. We did Rowasa enemas for 6 weeks and added pentasa. Pentasa was because of biopsies that showed there was past inflammation in small bowel.Then added mtx also because of biopsies. Originally she was pleased with colonoscopy. (To the eye looked like inflamed area was where we could reach easily)
 
We're looking at Uceris also. That will only help the colon. It spreads more evenly over the colon but I still haven't seen research on how much gets to the rectum.

HUGS
 
I know your GI seems to be resistant to outside the box therapies, but why not try a short course of LDN before moving on to the next big thing like Cimzia or something else. What could it hurt??

Uceris is just like pred for EJ! He feels great but the same side effects. I want him off it:(
 
Well...we're back to Rowasa enemas for 2 weeks. Then labs. Brian is up to 74lbs 12oz!! (That's a 6lb 10oz weight gain in 27 days from the ng tube!!) No heighth yet, but wasn't expecting that just yet.

Mark...that's a thought about the LDN. This would be our window.

Its so puzzling because he's not in pain...just more stools(3-4 a day)...some loose, some diarrhea. and some blood-not much-but blood is never good! After 3 days on Rowasa...stools back to 1 a day. Did see a large amount of logs today. But seeing occasional bright red blood but mostly on the t.paper now. Some red floaty things.
 
Glad the rowasa seems to be helping.
Gi told us that is a possibility for DS .
But scope first .

Woohoo on the weight gain...
Long may it continue.
DS got weight first then six months later growth .
 
That's great that Brian is gaining weight! He seems to have a great attitude about the GN tube which is lucky.I just wanted to mention that we have played around with giving Max his Humira shot every 9 days instead of 7. The longest we can go is 8 says,any longer than that causes a bunch of more bathroom visits.I know you said that the doctor seemed to think that giving the shot more than every other week caused c-diff etc. But you don't know that for sure. It might be worth giving it one more try to go to weekly.Just a thought.
 
I see he's on MTX. Has a trial of 6-MP been done to see if that would do better?

My son's doctor has also had him do rounds of Flagyl and Cipro.

Rifaxin is another drug that I have heard used with some success.

You don't list probiotics - have you considered adding this?

If his disease is in his colon and not his small bowel you may want to seriously begin considering surgery. It's a difficult choice but many people say it has given their children their lives back.

Best wishes.
 
There are still options to try if the Cimzia is not the answer so don't give up.

I think you're right about surgery and the rectum but if his disease is completely in his colon I have read of other kids having a temporary diversion done to help the colon/rectum heal and then reversing the surgery. Don't know about the long term success with those cases.

Sending wishes for answers and good health.
 
Give your son a smallish section of velcro.

When the mean kid bends over, "rrrrrip" goes your son with the velcro so the other kid thinks he's ripped his pants.

Hilarious. Totally hilarious and it can be done anonymously.
 
So B's done with Humira? I know he's not gonna be missing that!! Best wishes and many hugs Kathy!!! I know there's always a lot of worry when starting something new!
 
Good luck! I hope Cimzia is your miracle drug!
Let us know if it hurts as much as Humira, if Remicade fails, we'll also be trying Cimzia next!

Maya
 
Thanks all. I'll keep you posted. My husband and I just wolfed down leftovers while he drank a can of pediasure for his dinner. I think we are going to lose weight. I find myself sneaking. Ate a cookie in my little pantry earlier!! Luckily my son is off at college and my daughter is married so its not like I have a house full that needs meals.

Mark, You're so right about the Humira. When we first told him the plan he was grinning ear to ear. Then, actually doing the total EEN has been a different ball game! Its only day 2. It'll get better I hope.

MLP, You're right about at least 'having a plan'. Its been stressful. It felt like we had no one guiding our ship for awhile. I'm pretty sure she contacted Dr. Baldasano at CHOPS. (She eluded she might at last appt).

Maya, I've also heard that Cimzia doesn't burn. But its 2 syringes each time.

My husband and I have no medical talent. Never Never thought we'd be doing shots, enemas, ng tubes...etc. I told my mom; Don't people go to school and learn about this stuff? Then practice on things that aren't real people before they are unleashed on the public. For the enemas we were sent home with a script and the box the pharmacy gave us had an instruction paper in it. We were shipped Humira syringes by accident one month...so we had to read the pamphlet enclosed. Both times, by no choice, we practiced on Brian. Wow...All us crohn's parents have a lot to learn quickly! You all experience all this same stuff too. Crazy
 
My niece is on Cimzia and she has previously been on Humira, she said Cimzia wasn't as bad shot wise as the Humira. I hope the Cimzia works its magic.
 
When Humira stopped working for my son, Gus, we looked at Tysabri. That was a "no go" because Gus has the JCV antibodies. Our doctor had us try Tachrolimus for a little while, but it was not effective for Gus. He is finally on Stelara and doing well.
 
Not sure if this total EEN is going to work........ Hats off to all the kids and their parents on here that have accomplished it. We've had vomiting... and now shut down of eating those pediasures. That surely will bring weight loss! Oh yay!! (I drank a few today with him, it kinda makes your stomach feel like a balloon has been inflated in there... then I had cramps!)
 
Same here, Brian'sMom, I drank some with C when he was supplementing and I had the same inflation/cramping feeling!!
 
Kathy, you know we've no experience with EEN but I do remember reading others having to find a formula that worked for them because of problems like B's having. I hope this bad experience doesn't turn him off to the whole idea!
 
We tried boost but it was too hard on DS's system.
We had to switch to peptamen jr when he went EEN.
The taste was worse but it is easier on the digestive tract.

Good luck
 
How quickly do you drink a shake? Is it supposed to be drunk slowly? I'm just wondering because with an NG tube, there is a set rate and, although Stephen was given some room to play with the rate, the comment was 'you can speed it up if you feel well with it'. Perhaps it's easy to drink it too quickly?? And, can it be diluted a bit with water?
 
I don't know if you or your doctor would be into this,but the picc line worked great for us.It was hard not to be able to eat,but it did put on weight and the intestines got a chance to heal up.
 
I second what Tesscorm said - my daughter has figured out if she's drinks her shakes too fast (hers are peptamen jr) then she gets nauseous and feels really full!
 
Might be worth trying a different formula? My son only got a sore tummy if the liquid went into his bolus too fast. May be worth trying an NG tube if he would tolerate it - no horrible taste and you can regulate the speed/amount quite easily. Hope things get better - it really is worth persevering!
 
Gus uses Ellecare in his g-tube feeds. It comes in flavors, but he prefers unflavored.

The PICC line was great for getting the nutrition in and helping Gus to gain weight. That process was a bit more involved than the g-tube feeds. Ultimately, Gus was happy to have it removed so he could swim over the summer.

For us it's a bit of a struggle. Weight is always an issue. Gus is growing very tired of running the g-tube feeds and resists hooking-up at night and/or turns it off before the bag is empty. At least with the PICC line, he was able to get 100% of the feed into his body and allow his gut to rest.

Good luck. I hope you find a solution soon.
 
Ok, we're back on trying the EEN!! But no drinking it. Brian would rather have it in the NG tube. So here we go again!! We're going to do it 4pm to 7am, or 7pm to 7am (not at school.) (The dietician said for him she doesn't want his flow rate between 85- 120... that's how we got the 2 schedules) His symptoms are getting worse. Starting to vomit when he cramps...but still just 1 stool a day like that. Rest is 'debris' kind of gas/poo. (Sorry to be so descriptive)
 
I hope the NG tube does the trick Kathy...:ghug: Good luck!

Sending loads of luck and well wishes your way. :heart:

Dusty. xxx
 
Hi, hope things are working better for him. I was tried on Humira for a few short months, it helped a little, but not enough. I was then tried on a combination of Remicade and Imuran. My inflammation markers came crashing down after that, I started gaining weight, increased hemoglobin, and my frequency cut in half. Its been a year on Remicade now and still doing much better, blood tests are back to normal. Still some frequency and urgency, but no pain or cramping. Also no more joint problems, mouth sores, eye inflamation, night sweats, etc.

Not sure if this is an option for him, but this was my experience after Humira. Hope the info is helpful.

GH
 
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