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03-28-2013, 07:06 PM   #1
Brian'sMom
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Biopsy results

Our GI called today. From the colonoscopy last week our GI was so pleased to tell us that only his sigmoid colon and rectum showed activity. Everything else looked good...but the biopsies told another story. Only his esophagus has no inflammation. Every biopsy from every where she took one throughout his GI tract shows mild inflammation! She was surprised. She wants to add Methotrexate. She said they do imuran with girls and the Mtx with the boys. She said she likes to start with injection and then maybe move to pills.

Are the pills daily btw?

UGH....when will this boy catch a break?! I know we're all saying that, we're in this together. All I can think to stay sane is...At least its mild.

He feels great. He thinks he's all good. SED was only 31 and CRP 1.3. That's low for what has been a few years ago.
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
03-28-2013, 07:10 PM   #2
Clash
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Sorry to hear the biopsies showed inflammation in so many areas. MTX in the pill form you take once a week. The px we have is 2.5mg per pill and my son take 25mg so ten pills.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-28-2013, 07:14 PM   #3
my little penguin
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hugs
Ds did injections once a week.
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DS - -Crohn's -Stelara -mtx-IVIG
03-28-2013, 07:18 PM   #4
rollinstone
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Like you said, atleast it's mild, on the bright side it showed an improvement? Meaning things are likely still improving, hopefully by next scope the biopsies will be clear of any inflamation
03-28-2013, 07:24 PM   #5
CarolinAlaska
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Sorry to hear Brian has to get injection (my dd would hate that) and change plans, but glad that she did the biopsies that tell the whole story... Even improved blood tests that are abnormal still mean abnormal - it seems they are matching the pathology... I hope everything goes into remission from here...
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
03-28-2013, 07:45 PM   #6
Brian'sMom
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Sorry to hear the biopsies showed inflammation in so many areas. MTX in the pill form you take once a week. The px we have is 2.5mg per pill and my son take 25mg so ten pills.
I'd like to start with the pill. Then move to shot if it doesn't work quick enough. That's her whole reason to start with the injection...she says the shot works quicker. Its mild in there...but maybe she's worried we're moving in the wrong direction the past few months. Does it take a long time to see affects with the pill...a build up time like azathioprine?
03-28-2013, 08:00 PM   #7
Clash
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I think with MTX it can take up to 6 weeks to be theraputic. I don't know if I've noticed a difference since we added MTX. C was making it a little under 5 weeks with absolutely no symptoms before the MTX now he is seems to be making it six so maybe that is the MTX.
03-28-2013, 08:09 PM   #8
my little penguin
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we did the shot because IBD kids have a hard time absorbing the pills since there area they need to absorb it tends to be inflamed.
The shots have less side effects than the pill.
AZMOM can explain it since her daughter is on the shots as well.
03-28-2013, 08:18 PM   #9
Brian'sMom
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Our GI says the shot causes more symptoms and not the pills...I've seen different things on here. Maybe its just the person. My son has reacted to some meds...but not others. Who knows. I just really don't want him to have to endure a shot every 7 days along with a different shot every 10 days and then flu symptoms all weekend on top!
03-28-2013, 08:47 PM   #10
S mom
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My son says the mtx shots are really easy and not nearly as painful as the Humira. He has reported no side effects in over a year and a half of taking it (as long as he takes the Folic Acid supplement). Our GI said mtx could take up to 12 weeks for full therapeutic levels.

As will all CD things, however, nothing is the same for everyone! Good luck!
03-28-2013, 11:01 PM   #11
Brian'sMom
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I just am still shocked that the biopsies showed inflammation all over! I thought he was getting better and this was just a minor flare in his rectum. He feels good. He's going to be surprised too. I think I'll just tell him we're adding some stuff to get him all the way to remission. He doesn't need details at this point.
03-28-2013, 11:06 PM   #12
rollinstone
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I wouldn't be too hard on yourself, you're heading in the right direction anyway, obviously no inflamation is what you want but mild is the very next stage, so with a little bit more time itl likely improve, just the fact that he feels good is proof things are improving, stay strong and positive and you'll get there! Do you use supplements for your son?
03-28-2013, 11:22 PM   #13
DustyKat
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I'm so sorry to hear that things weren't as expected Kathy.

We have no experience with Metho here but I hope it does the trick for Brian, as you say, he surely does deserve a break! Bless him...

Dusty.
03-29-2013, 04:19 AM   #14
Sascot
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Sorry to hear about the inflammation - very disappointing. Hope the Metho does the trick!
03-29-2013, 05:11 AM   #15
Dexky
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Is there a time frame for rechecking scopes to see if the mtx is doing the trick? I hope Brian tolerates it w/o ruining his weekends!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
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03-29-2013, 05:58 AM   #16
AZMOM
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Hey - the key to the shot is absorption. Gets you to the therapeutic level more quickly.

When Claire was in the hospital and we had to quit 6mp and were starting MTX, her doc had the nurses administer one Tylenol and one Benadryl an hour before the injection. Ask your GI about that

We didn't continue that at home but now that her dosage has in erased I may try it. Just like everything else lol, what happens to one kid doesn't seem to happen to another!

They offered zofran if she had nausea issues (when she was on MTX at age 4 we had that issue) but she's not had any nausea at all this go around.

Keep me posted!!

Bug hug,

J.
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Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
03-29-2013, 07:16 AM   #17
Brian'sMom
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Is there a time frame for rechecking scopes to see if the mtx is doing the trick? I hope Brian tolerates it w/o ruining his weekends!
3-4 months and then scope again was her plan. But she's famous for changing her mind
03-29-2013, 07:34 AM   #18
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Haven't tried Methotrexate myself, but have heard that it can be very effective, good luck and hope the inflammation and pain is under control soon X
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Originally diagnosed UC April 2008
Diagnosed Crohn's 2009

Current meds: Rifinah - treatment for latent TB to prepare for Infliximab infusions beginning of July 2013.

Previously prescribed:
prednisalone
mesalazine
Azathioprine
6-MP

'Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference'
03-29-2013, 08:34 AM   #19
Brian'sMom
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Talked to IBD coordinator nurse this morning. She works with all the doctors. She was very upbeat. Thought his biopsy results looked pretty good considering. Definately thought the Humira was working...but adding Mtx would 'enhance' its effects. She said to get perfect biopsies with a kid with crohns is what they hope for but don't see all that much. Having it mild was good and since he's feeling good that is important in judging his crohns. The active part in his rectum needs clearing up but we're on right path. I feel better.
03-29-2013, 05:05 PM   #20
Dexky
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Happy, happy, happy
03-30-2013, 12:25 PM   #21
AZMOM
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Yay Kathy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Love & prayers. :-) I'm feeling teary about all these kids today and needed your upbeat news!
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04-01-2013, 04:16 PM   #22
Brian'sMom
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We started Methotrexate Saturday. I was apprehensive and of course didn't say anything to Brian about possible side effects...as I never do. Sunday he woke up feeling like normal. As the day went on (and outdoor temperatures climbed to 70 degrees) Brian kept all of us busy. Bike ride...kicking a soccer ball around...and even capture the flag. We were all exhausted... (But he'd never admit on a day that nice.) I don't think he was having any nausea. He took 4-2.5 mg pills...not sure what the normal dosage is per his weight. Maybe that's a small dose. We are to continue with Humira/10days and nightly Rowasa enemas. He still isn't normal in the bathroom...Kinda constipation-maybe from the enemas.
And the newest MTX...Now I just hope this drug WORKS!!! Be Gone Crohn's

Last edited by Brian'sMom; 04-01-2013 at 05:13 PM.
04-01-2013, 07:21 PM   #23
Dexky
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Is the intent still to go back to 2-week Humira or stay at 10 days? That would make it hard to keep up with it seems!!

I hope Brian avoids all the mtx sides and it does the trick for him and you! Awesome first day!!
04-01-2013, 07:31 PM   #24
Brian'sMom
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Is the intent still to go back to 2-week Humira or stay at 10 days? That would make it hard to keep up with it seems!!

I hope. They just said to stay at 10 days, no mention of any change right now. He has been so 'all over' with his inflammation since August so that needs to stable out I'm sure. I really have to keep it on the calendar since the Humira day jumps all around.
How is EJ doing with his Humira? All good I hope!!
04-01-2013, 07:35 PM   #25
Dexky
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He'll have bloods in the next few weeks for the first time since going weekly but he's really seemed to feel well lately! His bm frequency has seemed to go back down too.
04-01-2013, 07:57 PM   #26
Tesscorm
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I`m so glad all went well for Brian over the weekend!!! I hope he continues to be side effect-free from the mtx!

And hoping that addiing the mtx can quickly bring the inflammation down (and away!).

Lots of hugs!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-01-2013, 09:24 PM   #27
AZMOM
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Kathy - I'm ecstatic that the first MTX weekend was smooooooooooooootttttttttthhhhhhhhhhhhhhhhhhhhhh :-)

J.
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