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02-13-2013, 10:02 PM   #61
my little penguin
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Yippee!,,
Hope it's not the increased mtx.
Ds had horrible fatigue with mtx for two to three days.
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02-13-2013, 10:04 PM   #62
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Yeah MLP, Im a little twitchy. She hasn't really had that but something's different....,
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Julie

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
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
02-14-2013, 01:29 PM   #63
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Glad things are better for you. If you don't mind me asking a question, our GI is recommending a switch from 6mp to MTX. I see you had done 6mp and allopurinal. Was the allopurinol added due to 6mp not getting to therapeutic levels? Did that not do it either? We haven't tried adding allopurinol yet but I'm pushing for that before switching to MTX. My son plays hockey and if the mtx is wiping out your daughter like that I really would like to avoid it.
02-14-2013, 05:59 PM   #64
my little penguin
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Allpurinol is added to devert more of the 6-mp from the liver and to the body instead.
My son had high liver levels so 6-mp + allopurinol was added to see if enough could be diverted away without getting too much in the rest of his system.
Gi cut his 6-mp dose to 1/4 of what it had been .
This caused his liver levels to go back to normal.
But also decreased his 6-mp levels.
We tried to increase his 6-mp levels but this raised his liver numbers again.
This led to lower the 6-mp again which left him with symptoms.

So for DS after playing switch the dose for 4 months all the while DS being miserable we decided to try Mtx.
Our theory was we wanted DS to completely FAIL 6-mp before we moved on to the next drug.
On paper this is good but having a kid still in pain well.....
Mtx was tried with pred to give the Mtx time to build up in his system.
He did have fatigue with it. But not every shot.
He was also weaning pred so not a good comparison.
He was never able to get below 20 mg of pred without having increased symptoms. For DS this included vasculitis - which can be dangerous.
After eight weeks it was agreed to start remicade in order to wean him from pred.
You give the Mtx on Friday to avoid the side effects during the week.
Also most have no side effects especially if folic acid is taken.
The goal is to get to a healthy kid.
Unfortunately how each kid reacts to a drug can't be known until they actually try it out.
Wish it was easier .
Hugs

Last edited by my little penguin; 02-14-2013 at 06:18 PM.
02-14-2013, 06:48 PM   #65
AZMOM
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Okay ALoTtoLearn.......

Yes, Claire could not get to a therapeutic level on 6MP. Even after a year. She became symptomatic and liver numbers on a dramatic rise. So, the GI recommended the Allopurinal/quarter dose of 6MP. As MLP explained so well, the idea is to change how it's metabolized. There is still a little danger in that. For Claire, it shut her bone marrow down and she quit producing red blood cells at all. Because she's such a trooper, she was critical low (hemoglobin 5.1) before we figured out what was going on. SOOOOOOOOO - my advice if you go allo/6mp route when you start is weekly or at least bi-weekly labs at least and to err on the side of caution if you suspect things are amiss. Do I regret giving it a shot? No. I regret not asserting my suspicions when she started acting tired between routine labs. Don't let my story make you afraid.

With the MTX, she has been on 0.6 ml/25mg vial injections for about 20 months and done relatively well until recently. No significant side effects other than an occasional headache relieved by Tylenol. Last weekend we increased to 0.8 ml/25mg vial so I'm trying to decide if that's what wiped her out early this week. I erred on the side of caution for early labs since she was acting funky. :-) It is one of those time will tell things......I will let you all know how this weekend goes.

MLP - I'm sure you've heard me say it before but I so wish we could try a biologic!!!!!

Big hugs,

J.
02-14-2013, 07:11 PM   #66
my little penguin
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Hope the Mtx does not give you a repeat performance this weekend.
Hugs.
02-15-2013, 04:30 AM   #67
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Hope things keep getting better and the Methotrexate doesn't make her too tired again this weekend. Life's never simple is it
02-15-2013, 06:12 AM   #68
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Good to hear they're both getting better J!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
02-16-2013, 07:14 PM   #69
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Shot last night. Felt good but pale this AM. Overindulged her with a Justice shopping spree for about an hour. Now for the last four hours, this is it.....

image.jpg

Comments? Does 2 weeks a trend make? I don't know.....
02-16-2013, 07:41 PM   #70
my little penguin
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Two weeks- 2 Points makes a line .at least in data analysis.
A true trend can only be seen after three or four .
However
Given she is a kid I would talk to your Gi and maybe based on their experience
They can say yep btdt with other kids time to try something else or adds xyz kwim.

Can your Gi try a lower dose but higher than her usual ( like 0.7??)
Hope the rest helps
02-16-2013, 09:15 PM   #71
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She is out, hope you get it all worked out, I honestly can not remember if Jack was extra tired with MTX or not just remember the awful cough.
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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
02-17-2013, 08:50 AM   #72
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No experience with MTX but I do remember in talks with Aura about it, she would always mention being wiped out by it. Hi K!!
02-23-2013, 04:26 PM   #73
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Hey J...

I have missed so much, I'm sorry.

I agree with Dex re the Meth. I have read of Aura and others experiences on here with it and for some the day or two after was a wipe out.

Harking back to the EN. Although it does appear that small bowel disease responds best to this treatment there are reliable studies, don't ask me to pull them up now! , that contradict this and have found that large bowel disease responds equally well. Whether it works for UC is what still seems to be stumbling block.

How is Claire doing now?

In my thoughts,
Dusty. xxx
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02-26-2013, 08:45 PM   #74
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J, Do you know if there is different side effects with MTX injections vs the pill form? How is Claire doing lately? It'd be hard to see your bundle of energy sleeping when she normally wouldn't be. I hope its all evened out.
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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.
03-01-2013, 08:52 PM   #75
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Kathy - there can be issues with absorption with the pills. We heard that back in the arthritis days too and that was before the gut issues. Both rheumy and GI agree that the injections are her best chance.

Last weekend, the malaise was marginally better but still noticable.

Labs this week look good overall but she has had SIGNIFICANT bleeding today.

Sigh........

J.
03-02-2013, 09:45 AM   #76
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DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
03-03-2013, 08:13 AM   #77
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Thanks T.

Up early while all the chillins are sleeping in..... Praying for a blood free, pain free, post methotrexate headache and nausea free Sunday......we'll see what I get!

J.
03-03-2013, 09:25 AM   #78
my little penguin
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hope you get your wish

Well Vibes your way
03-04-2013, 11:13 AM   #79
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So... did she have a good day yesterday?
03-04-2013, 04:44 PM   #80
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How's she doing?
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Carol
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.
03-05-2013, 09:17 PM   #81
AZMOM
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Thanks for checking. We are 14 days from MRE and 17 days from appt. Im sitting on my hands to keep from dialing the doc.

We are seeing daily blood. Her counts last week were good though. And she bounced back better from the MTX this weekend.

Here's a question for you all. Do your kids complain of pain under both sides of their ribs ever? She complains it hurts when she takes deep breaths. At first it was a rt side complaint now it's bilateral.

She is adamant about not wanting prednisone. Not sure we're gonna dodge it this time.

J.
03-05-2013, 09:19 PM   #82
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Sorry she's not doing better... I hope the MRE gives you some answers.

Stephen's never had pain like you describe...

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
03-05-2013, 09:25 PM   #83
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Thanks Tesscom. I was reading online and I have an irrational fear of lupus. Not sure I've ever shared that on here. Anyway she has some + antibodies (ANA, Smith, etc) that are usually consistent with lupus. She's just never shown signs. So when I was reading about pain with deep inspiration I started getting paranoid.

Whew. Now that I said it out loud, surely we aren't heading down that road.

On doc day we see both rheumatology and GI so Im going to pick the rheumys brain. He's fabulous.

J.
03-05-2013, 09:34 PM   #84
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I just searched back to one of my old threads... my daughter was having some issues (all started with some pain in her pinky! ), one thing let to another and our GP tested her ANA level. It came back slightly high! and she was referred to a rheumi. I was also worried about Lupus (and I believe RA can also cause a higher than normal ANA)!

In the end, after additional testing, there was no RA nor Lupus... rheumi explained that it is not unusual for someone to have a slightly elevated ANA if an auto-immune disease is present in the family and that this does not mean that they have or will develop lupus!

Useless to say, I know but... try not to worry too much until you can get some answers!
03-05-2013, 09:39 PM   #85
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Thanks.

Yes I understand about the ANA. Claire was rheumatoid factor positive too along with the ANA at time of arthritis dx. Sigh. The concern was primarily due to the anti-Smith and another one whose name is escaping me. I'll have to look it back up.

J.
03-05-2013, 09:48 PM   #86
my little penguin
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Ds has /had pain under his ribs .
Asthma / crohn's /just being DS
Who knows - so far my head is in the sand on that one.
03-05-2013, 11:14 PM   #87
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I'm sorry she is still having blood. Is her rib pain worse after a meal? I know some meds can cause pancreatitis which organ is bilateral... Just throwing that out for what its worth...
03-05-2013, 11:48 PM   #88
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I wonder too CarolinAlaska. This morning it was within 5 mins of breakfast. It subsided and I took her to school. I know she wasn't angling to stay home because she was all dressed up in a new outfit complete with sequins on her skirt and flower in her hair to help lead the pledge at school. She took off her shoes, got in my bed balled up in the fetal position. 10-15 mins later she got up. Said it was bothering her but she didn't want to miss the pledge - God love her.......


J.
03-05-2013, 11:49 PM   #89
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Gotta love watchful waiting.....NOT SO MUCH......
03-06-2013, 05:52 AM   #90
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I hope the pain's just a memory this morning! Did she stay at school all day yesterday? I'm sure she did, you'd have said otherwise. Hoping for a quiet day Julie
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