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


 
12-16-2013, 09:18 PM   #31
Maya142
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I haven't heard of any kids with two types of JRA, so I have no idea! It's possible that the dr will have a clearer idea of what Grace has as she grows older. My girls weren't officially diagnosed until they started having sacroiliac joint pain, which for my older daughter was a full year after her other joints (knee, heels, ankle) started hurting.
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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
12-16-2013, 09:21 PM   #32
Farmwife
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The rheumy wanted me to call and up-date her on Grace. I'll ask if she chose one. I do know she said officially diagnose.
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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
12-16-2013, 09:52 PM   #33
kimmidwife
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I hope she is feeling a little better. The methotrexate kicked in pretty quickly for Cailtyn way back when she was on it. Hopefully it will be the same for Grace.
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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.
12-17-2013, 10:17 AM   #34
Farmwife
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Did the rheumatologist say what kind of juvenile arthritis she has?
I just talked to the GI nurse who read the dx. It's the polyarthritis.

Taken from Kidsgetarthitistoo.org
Polyarthritis: This type of JIA – “poly” means “many” – occurs when five or more joints are involved during the first six months. Roughly 25 percent of children with JIA have polyarthritis. Like oligoarthritis, it’s more common in girls. But its onset can occur any time in childhood. Both large and small joints, such as the fingers and toes, may be involved. Your child also may experience arthritis in the neck or the jaw, making chewing and opening her mouth more difficult.

Unlike oligoarthritis, polyarthritis more frequently affects joints on both sides of the body, such as the right and the left knees. Children with polyarthritis might face a lower risk of eye inflammation, but will still need to see an ophthalmologist on a regular basis.

The JIA criteria also sub-divides children with polyarthritis into two categories, those who test positive for rheumatoid factor (RF) – an antibody found in the blood – and those who don’t. The RF-positive form of the disease usually emerges in the elementary school years or later. It’s the type most similar to adult rheumatoid arthritis. Children with RF-positive polyarthritis are typically more vulnerable to severe disease and related joint erosion than those who test negative for rheumatoid factor.

Maya did your kids test positive to the RF? Your girl that has IBD, does she struggle more with JRA then her sister?

Last edited by Farmwife; 12-17-2013 at 10:47 AM.
12-17-2013, 11:05 AM   #35
Maya142
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Mine didn't test positive, the kind of arthritis they have is seronegative.
My younger daughter M does have a harder time than her older sister, though her sister has been through a lot too. We just can't seem to get M into remission - she did very well on Humira, but hasn't been doing quite as well on Remicade. Her GI symptoms are mostly controlled on Remicade, but not her joint pain.
12-17-2013, 06:41 PM   #36
Farmwife
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Could it be that mtx is working this fast??????
I'm almost afraid to type it.

She's poo'd once today, a lot. I mean A LOT!

That's the good part but...........................
the joint pains, fatigue and cramps are still bad.

Oh, the GI and Rheumy have said NO to ANY pain meds other than Tylenol.
I said she is in so much pain she can't use her arms sometimes
(her shoulder and one wrist and a thumb is involved).
Still she said no and to use heating pads and warm baths.:

Hopefully the mtx will fix things quicker than later.
12-17-2013, 06:53 PM   #37
my little penguin
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ask about exercises- moving helps with sore joints ...but the doc can tell you the right type of movements for her.
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12-17-2013, 08:09 PM   #38
crohnsinct
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Also tell your doctor if you are taking nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin, choline magnesium trisalicylate (Tricosal, Trilisate), ibuprofen (Advil, Motrin), magnesium salicylate (Doan's), naproxen (Aleve, Naprosyn), or salsalate. These conditions and medications may increase the risk that you will develop serious side effects of methotrexate. Your doctor will monitor you more carefully and may need to give you a lower dose of methotrexate or stop your treatment with methotrexate.

Sorry Grace...I am voting stay away from NSAIDS. Not to mention they complicate the IBD issues.

FWIW - it took almost the full 12 weeks for us to see any reduction in O's joint pain but they "think" she has psoriatic arthritis not jra.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
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Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
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Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-17-2013, 08:22 PM   #39
Maya142
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My daughter needs NSAIDs for joint pain. There is no way she would get through the day without them, as I'm sure I've mentioned before. That said, I spend many sleepless nights worrying about what it is doing her GI tract.
There are no good options unfortunately…Even with Remicade, she still needs her NSAID. Hopefully, eventually she will go into remission and we'll be done with NSAIDs.
So, no answers but hope mtx kicks in sooner rather than later!
12-17-2013, 08:22 PM   #40
Farmwife
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Also tell your doctor if you are taking nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin, choline magnesium trisalicylate (Tricosal, Trilisate), ibuprofen (Advil, Motrin), magnesium salicylate (Doan's), naproxen (Aleve, Naprosyn), or salsalate. These conditions and medications may increase the risk that you will develop serious side effects of methotrexate. Your doctor will monitor you more carefully and may need to give you a lower dose of methotrexate or stop your treatment with methotrexate.

Sorry Grace...I am voting stay away from NSAIDS. Not to mention they complicate the IBD issues.

FWIW - it took almost the full 12 weeks for us to see any reduction in O's joint pain but they "think" she has psoriatic arthritis not jra.
Well I'll be, that there does make some sense.
Thank you once again CIC for calming my wrath down.
And for making sense out of the senseless.
12-17-2013, 08:27 PM   #41
Farmwife
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My daughter needs NSAIDs for joint pain. There is no way she would get through the day without them, as I'm sure I've mentioned before. That said, I spend many sleepless nights worrying about what it is doing her GI tract.
There are no good options unfortunately…Even with Remicade, she still needs her NSAID. Hopefully, eventually she will go into remission and we'll be done with NSAIDs.
So, no answers but hope mtx kicks in sooner rather than later!
Maya, they have us between a rock and a hard place.
I would use it if I was in your spot.

I was wondering about Pred. Maybe a short burst???
My only fear is their concern over her low cortisol levels.
Off to research that topic.
12-17-2013, 08:31 PM   #42
Maya142
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Steroids work very well for my daughter though she hates the side effects (moon face). But they help SO much with pain. We try not to use them but have had to twice this year. She's usually given 20mg.
Definitely ask your doctor!
12-17-2013, 08:36 PM   #43
my little penguin
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Since she had possible adrenal insufficiency from being on steriods before (????)
Probably not something your docs are going to go for kwim
12-17-2013, 08:38 PM   #44
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FW,
What about taking her swimming again? Didn't that help her a lot last year? I know for my fibromyalgia getting in the pool is like a miracle for me. Keeping my fingers triple crossed that the MTX works quickly for her.
12-17-2013, 08:56 PM   #45
Farmwife
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Since she had possible adrenal insufficiency from being on steriods before (????)
Probably not something your docs are going to go for kwim
Yes I understand but I'm hoping to test her level again and see what it is at.
They only did a am cortisol test ONCE. I'm hoping it was just a fluke. We'll find out.


Kim she starts water therapy again in a couple weeks.
I am already doing stretching with her.
Thank God we're on break from school. I don't think she could make it right now.

She still is making a Christmas list. She seems to think if she hurts she gets all the presents she wants.
I told her that's not how it works.
Then my mom and mil called...........................Ya, she's pretty getting everything she wants.
12-17-2013, 08:58 PM   #46
kimmidwife
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I am glad she is starting the water therapy again. Keeping fingers triple crossed that it really helps. She definitely deserves everything on her list!!!!!
12-18-2013, 02:53 PM   #47
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Just checking in farm wife - hope grace is doing better and the mtx is starting to have a positive effect. Lucy always gets what she wants too even if I say no, somebody (usually a nanny or grandad) gives in cause they feel sorry for her. Her grandad bought her a new pony for Xmas just cause she asked nicely but you know our kids suffer so much every day sometimes it's nice to be able to make them forget even if it's only for a few mins.
12-18-2013, 03:21 PM   #48
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FW, I know next to nothing about arthritis nor appropriate treatments but... my mom has had a form of arthritis (beleive it's osteoarthritis) since she was in her 30s. The pain and swelling have been quite severe at times, especially her knees. When it's been particularly bad, she's had cortisone shots and, although she's said they are extremely painful, they also bring her incredible relief, very quickly. I don't ever remember her mention any side effects (by side effects, I mean things like moonface, mood swings, weight gain, etc., obviously the general/long term risks of steroids are still there).

I'm sure if this was a viable option to use with IBD, the specialist would have mentioned it but... just in case, wanted to pass it along.

(If you want any more info on it, I can ask my mom.)
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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
12-18-2013, 03:38 PM   #49
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A real pony, Polly? Wow!
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- added Methotrexate/Folate March 2016
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12-18-2013, 04:22 PM   #50
kimmidwife
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A pony that is awesome!!!!
12-18-2013, 04:30 PM   #51
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OMW, Polly I am so expecting that some day for Grace. I have ASK and PLEADED with my in-laws to wait until she can take of it herself.

Where are you going to board it? Has she taking reading lessons yet?
12-18-2013, 04:37 PM   #52
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I loved my Pony - Brandy Joe. He was awesome - loved black licorice and popsicles. I didn't get him until I was about 8. I would even go trick or treating at Halloween with him. We lived out in the country and it was a long walk between houses much better to ride my pony. Costumes usually involved something on horseback - princess, cowboy, american indian.
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Husband dx Crohn's 3/1993
currently none due to liver issues
12-18-2013, 04:50 PM   #53
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OMG, my daughter would be soooo jealous! She rode and competed in jumping, etc. for years... but, being city girls, I absolutely drew the line at OWNING a pony or horse!
12-18-2013, 05:32 PM   #54
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Sorry haven't been around as much. That's good that they have an actual diagnosis. Hope the methotrexate kicks in soon so her pain eases. At least Christmas will take her mind off things.
12-18-2013, 10:20 PM   #55
Farmwife
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FW, I know next to nothing about arthritis nor appropriate treatments but... my mom has had a form of arthritis (beleive it's osteoarthritis) since she was in her 30s. The pain and swelling have been quite severe at times, especially her knees. When it's been particularly bad, she's had cortisone shots and, although she's said they are extremely painful, they also bring her incredible relief, very quickly. I don't ever remember her mention any side effects (by side effects, I mean things like moonface, mood swings, weight gain, etc., obviously the general/long term risks of steroids are still there).

I'm sure if this was a viable option to use with IBD, the specialist would have mentioned it but... just in case, wanted to pass it along.

(If you want any more info on it, I can ask my mom.)
Yes some kids get the shot Tess. Nothing mentioned for Grace yet.


Well I got the call from the GI clinic.
The nurse told me the GI said it's up to us if we want to start Humira.
We have a February appointment.
So I can think, double think and triple think about it.

Well at least we have time to see if the mtx will work on it's own.

Grace had a BAD day. She just to tired and her back is really hurting. Abdominal pains making a return.
12-18-2013, 10:24 PM   #56
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My daughter got a cortisone shot in her knee once. It was very swollen and painful and the shot helped a lot. She was old enough that they didn't sedate her but with a child Grace's age I'm sure they would.
12-18-2013, 11:21 PM   #57
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Sarah's friend takes remicade, her parents say it the best treatment she has ever had.

Her disease is on the very extreme end things. Double hip replacement at 16 years. Legal blind due inflammation.
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Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

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12-19-2013, 02:29 AM   #58
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OMW, Polly I am so expecting that some day for Grace. I have ASK and PLEADED with my in-laws to wait until she can take of it herself.

Where are you going to board it? Has she taking reading lessons yet?
Lucy started pony lessons when she was just turned three about 5 months after her diagnosis . She went to a dance cladding with my other daughter and was unable to continue after 15 mins as her energy levels were so low. I was so upset but my dad and my sister persuaded me to let her try pony riding instead and between them they organised her first lesson. To say she loved it is an understatement - so she has been having a lesson every week since. She adores animals, so my dad bought her first pony about a year ago - he is teeny and because she has grown so much in the past few months (thanks humira) he is almost too small for her now - so fil felt it was his turn now and bought the new one. Like u fw I live on a farm so ponies are housed here with us and her riding instructer comes here every Saturday morning and gives her (and me) a lesson - absolute highlight of the week. Would really recommend it no matter how unwell Lucy is or no matter how sore her bum is pony riding gives her an amazing lift. Having ponies is a complete pita for me but it's worth it as she loves it so much. It's kind of amazing on some ways to see such a small girl in full control of a pony - and she looks so cute in her pink riding cap

So if your fil arrives with a pony embrace it . What is grace asking Santa for?
12-19-2013, 09:23 AM   #59
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Levsin? Has anyone used this drug? Did it work?

I'm worried because it sounds like it slows things down in the track. I don't need her going backwards here. But she does need some pain relief.
12-19-2013, 09:28 AM   #60
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Jack used it for a short time and it really worked. Not sure about slowing things down but it helped with the stomach cramping pain.
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