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Crohn's Disease Forum » Parents of Kids with IBD » MTX and maybe Humira for The Little Farm Girl


 
12-13-2013, 10:09 PM   #1
Farmwife
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MTX and maybe Humira for The Little Farm Girl

Rheumatologist Dx Grace with JRA today.
The doc said it was serious enough that she started MTX right then and there.
Also the GI and Rheummy are considering Humira as a add on.
We went off to labs to test for something for the possibility of Humira.
The doc also fears Grace has eye inflammation. So Monday we have to get into the eye doctor.
And then the Rheummy said we need to come back every 2 months for awhile


I feel so sick. I hate this! I'm so mad at myself for giving her the shot without thinking about it more. So not how I thought the day would go.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
12-13-2013, 10:24 PM   #2
DanceMom
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I'm sorry you have yet another diagnosis but I'm glad they had a plan. Now that A is dealing with more joint pain I'm curious how the JRA diagnosis is made?

I think it is a good idea to have an established ophthalmologist anyway. Our GI had us see one a few months back just to make sure there were no problems. We are to see her annually or if problems arise.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
12-13-2013, 10:50 PM   #3
my little penguin
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I know its a lot to take in but the reality is if JRA is not treated aggressively especially when it involves more than five joints ( each hand has 10 joints btw) very bad things can happen that are not reversible .
So it may not be the shot you want but
Mtx + humira has been proven to change the disease coarse and keep joints healthy.

Add in the both help Ibd a win win .

Ideally you like to wait but treating her effectively is key and getting her better.
When they add the humira
Ask the Rheumo about adding lidocaine to the humira syringe .

It makes a big difference in the pain caused by the shot .

Cry tonight and mourn the extra dx but to morrow big girl pants on for you .

Join the jra forums. As well
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12-13-2013, 11:10 PM   #5
Mehita
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Sorry to hear of another dx, Farmwife, but you're getting answers and it sounds like a plan is falling into place. Hopefully Grace will be feeling better soon.
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- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013

Last edited by Mehita; 12-14-2013 at 01:30 PM.
12-13-2013, 11:28 PM   #6
Jmrogers4
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Sorry to hear you are having to deal with yet another diagnosis but hope the Mtx and Humira give her relief from both diseases and she can go on her merry princess way.
Big Hugs!!
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
12-14-2013, 03:17 AM   #7
Catherine
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One of Sarah's best friend has JRA. She have never let it get in her way. She has just completed her VCE and hoping to go on to university. The treatments have improved so much in the 15 years since her dx.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
12-14-2013, 05:05 AM   #8
polly13
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Omg fw poor grace she is such a little soldier and has been through so much. Lucy is taking mtx and humira and is tolerating well. The humira shot hurts like hell but I promise she will get used to it. I don't know how it works in us but here a nurse calls to administer the shot and train on how do it my advice would be for u or dh to start administering ASAP yourselves - my husband and I were so nervous we brought back the nurse far too many times and it was only when we started doing it ourselves that Lucy chilled out and the process got a lot calmer and she doesn't even cry now.
I understand how you feel today - being told your kid needs these drugs is like a punch in the guts, but you will rationalise it over the next few days and while you will never be totally ok with it you will come to accept it. Hang in there mom your doing great. Give grace a big hug - hope Santa is going to bring her something really special.
12-14-2013, 07:57 AM   #9
dannysmom
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Thanks for the update. I hope the medication helps!
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12-14-2013, 11:31 AM   #10
Maya142
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So sorry to hear that. Humira and mtx were a magic combination for both my daughters. Each time we added a new med, I agonized about it, but more often than not, the result was was so incredible that I kicked myself for not getting my girls on biologics earlier.
My 19 year old is in college and is thriving on Humira and mtx. It'll get better.
Humira does hurt quite a bit though.
Good luck! I'll be thinking of Grace.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-14-2013, 11:35 AM   #11
Tesscorm
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I'm so sorry to hear about the JRA. But, hopefully, with a diagnosis, a solid plan can be put in place that will have Grace feeling much better! 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
12-14-2013, 11:43 AM   #12
Farmwife
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Thanks everyone,
MLP, what forums are there? I've searched but most forums for JRA are not current.


Grace is showing no side effects so far. She still is in pain but happy.

OK now that I have my thoughts together.......

What were they testing for in labs that have to do with Humira?

What is the success rate of just using mtx at achieving remission in IBD?

Why do they do labs every 6-8 wks? What will they be checking for?


Crazy, Of all the times I've read these it's completely different when it's your kid.

Last edited by Farmwife; 12-14-2013 at 12:08 PM.
12-14-2013, 12:01 PM   #13
Brian'sMom
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Sending hugs!! Our son's labs increased when methotrexate was added. They are checking his liver mostly. Not sure what the labs prior to Humira would mean. Could they want labs before starting to have a baseline? Not sure. We went from Remicade reaction right to Humira way back when.
12-14-2013, 12:46 PM   #14
polly13
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They are probably checking her immunity for chicken pox and other illnesses like that - I guess if she hasn't had them they will suggest vacination. They will also check for tuberculosis antibodies, as well as fbcs, full liver panel white cell, red cells and inflammation markers. Surprised bloodwork is every 6 weeks , Lucy initially got bloods every week with methotrexate and now 6 months in we get them done every month - bloods are as I've outlined above - it's usually about 3 vials of blood.
12-14-2013, 03:44 PM   #15
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I assume because C is older is blood work is further apart, every six weeks but in the beginning it went every week to every two weeks to once a month and now every six weeks. There are some kids in the IV lab that get there blood work every 12 weeks, so I guess it depends on the doctor or what the parent will accept, since these kids go to a doctor is the same group as C but not his doctor.

With MTX GI said they are checking liver panels and such to ensure MTX is having no effect on liver. I can't remember the other things they are testing for.
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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
12-14-2013, 05:15 PM   #16
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Thinking of you! Sorry to hear about the new diagnosis. It must have been stressful having to have the shot then and there. It will be worth it in the long run if it can help both the joints and IBD. Crossing fingers and toes that it helps soon!
12-14-2013, 07:08 PM   #17
kimmidwife
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Hope it works and she feels better quickly. I am not surprised by the diagnosis with all the joint pain she has had. At least the good thing is those meds help with both diagnosis so hopefully she will improve with both the joint and IBD issues. good luck I hope she starts feeling better fast.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
12-14-2013, 07:28 PM   #18
my little penguin
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Typically there are closed groups there
12-14-2013, 11:00 PM   #19
my little penguin
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Add this one
12-15-2013, 01:39 AM   #20
DustyKat
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Oh my goodness FW I am so, so sorry to hear this.

What an awful and heartbreaking time for you all and such a difficult time of year to have contemplate all that lay ahead.

I hope with this diagnosis now made that Grace soon finds long and lasting relief from the pain that has been plaguing her for so long. Lord knows you both need a break, your strength and determination through all that Grace has experienced is phenomenal and Grace herself possesses those same qualities. Bless you both for better days, months and years ahead.

Dusty. xxx
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12-15-2013, 04:13 AM   #21
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I'm so sorry to hear this, FW. I will be praying for your sweet girl and for you.
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*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
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12-15-2013, 07:19 AM   #22
Farmwife
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Thanks again everyone.

I feel a lot better today.

A question, does mtx cause lose stools?
12-15-2013, 09:38 PM   #23
crohnsinct
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A question, does mtx cause lose stools?
Hasn't been our experience and we weren't warned of it either.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
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Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
12-15-2013, 09:45 PM   #24
my little penguin
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If constipation was her issue then Mtx remicade etc
Causes the inflammation to go down but your stilling using miralax so hence the loose stool.
Its a balance as to how much miralax etc is needed and how long the Mtx will last .
That's a good thing
Good luck
12-15-2013, 10:43 PM   #25
Maya142
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Hope mtx starts working for Grace soon! I couldn't stop thinking about her today, because my daughter had a lot of joint pain, and I can't imagine how younger kids deals with it.
12-16-2013, 06:36 AM   #26
Farmwife
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If constipation was her issue then Mtx remicade etc
Causes the inflammation to go down but your stilling using miralax so hence the loose stool.
Its a balance as to how much miralax etc is needed and how long the Mtx will last .
That's a good thing
Good luck
That is something to think about. Thank you MLP
Before the shot I've had to up her Miralax. However yesterday she couldn't go again. She wanted to but nothing came out.
We'll see how today goes.
12-16-2013, 06:48 AM   #27
Farmwife
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Hope mtx starts working for Grace soon! I couldn't stop thinking about her today, because my daughter had a lot of joint pain, and I can't imagine how younger kids deals with it.
I was wondering Maya142, is there anything you do to help the girls sleep?
Grace has swelling in her neck and lower back. She can't sleep and keeps saying how much her neck hurts. I was wondering if theirs special pillows or something to help.


I am trying to research this but If mtx works does that mean the pain will go away in ALL the joints (11 joints and 3 spots on the spine)?
Plus does the spine count as a joint? If it does, do you count each vertebra or just the entire spine as one?

Sorry but for now your the only mom I now that has kids like Grace. HUGS

Last edited by Farmwife; 12-16-2013 at 07:04 AM.
12-16-2013, 07:11 AM   #28
CrohnsKidMom
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Hi FW, sorry to hear about little Grace. My son is on MTX and it initially loosened his stools and increased frequency. That was a good thing for my son as he usually has constipation. But, his system must be a little accustomed to the med now (he's been on it for about 4mths) as his frequency has decreased to every other day, once a day if we're really lucky. If it's a problem for Grace, you may see it settle as time goes on. MTX has worked well in my son. He still has some joint pain from the Crohn's, but it is decreased.
12-16-2013, 09:45 AM   #29
Maya142
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Unfortunately we struggle with sleep too. My girls take muscle relaxants because their muscles spasm at night (because of inflammation) but I'm not sure if that's an option for a child Grace's age?
We use heating pads too, the kind that have a timer, so that they don't get burned. My younger daughter used to get very tense because she would anticipate a painful night, so her psychologist taught her some relaxation exercises, those helped. When the medications work, both girls have no trouble sleeping, so I know it's pain related.
In terms of pillows, I know for lower back pain you can try a pillow between her legs (if she sleeps on her side) or under her knees (if she sleeps on her back). I don't know about neck pain because neither of my girls have it.
The pain in her spine is most likely enthesitis (inflammation where tendons attach to the bone). Did the rheumatologist say what kind of juvenile arthritis she has? Enthesitis also goes away with treatment. For my girls, the lower back pain is the last to go when they're in remission. They're never totally pain free, but they say that the pain that they have (when they're in remission) is insignificant, compared to what it was, that they don't care. But they also have erosions (damaged joints) and so if Grace doesn't have damage yet, perhaps with treatment she will be totally pain free.
For ankylosing spondylitis, studies show that mtx does not work on axial (spinal) pain. However, it has helped both my girls, possibly because besides their SI joints, they don't have inflammation in their spine joints, just enthesitis.
http://www.kidsgetarthritistoo.org/a...rthritis-3.php

This is a good image of where there can be enthesitis pain:
http://www.ncbi.nlm.nih.gov/pmc/arti...002099/?page=2

If you have any more questions, please ask! I'm more than happy to help.
12-16-2013, 09:10 PM   #30
Farmwife
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Thanks Maya,
The doc wasn't sure what kind. She said it could fit into two categories and one of them would be Enthesitis.
Can you have 2 different kinds? I wouldn't put it past Grace, she's always been an over achiever.
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