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Crohn's Disease Forum » Parents of Kids with IBD » Success stories with MTX?


 
01-14-2015, 02:25 PM   #1
lenny
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Success stories with MTX?

March 2013 Son (now 18 was diagnosed with Crohn's)
May 2013 in remission after drinking Peptamen for 6 weeks.
May 2014 Begins a flare, that takes him from 121lbs to 104.
Sept 2014 Hospitalized, given steroids, enters remission again and is put on MTX for maintenance.
Weight goes from 104 to 150 in less than 3 months and as he is now nearly 6ft tall, it's a GOOD thing.
November 2014 FCP 24, all blood work is good.
He felt pretty good until 10 days ago. He started having to go 2 or 3 times a day (normally just goes once) and had pain as well as the feeling of not being finished. One day he had blood in his stool. He never has blood. His appetite dropped dramatically. Tried contacting his doc, but they never got back to me and he seems better now. No more pain and his appetite has picked up, but it isn't exactly normal. Yesterday he had a small salad, a cheese quesadilla and a big smoothie..and quite a bit of ice cream I'd guess 1500 calories or so.
Should I wait and see or is the MTX not working?

Thank you!!!
01-14-2015, 04:04 PM   #2
nogutsnoglory
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Considering it worked so well I wouldn't give up just yet. Maybe he's going through an extra flare up. Low fiber diet, continue meds and discuss with dr is what I would do.

I was on mtx and did really well but I think it's the remicade that I was also on that was the big difference.
01-14-2015, 05:26 PM   #3
lenny
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I just heard him go into the bathroom for the second time today.

I try to give him a lot of privacy, but I can hear him turn on the bathroom fan in the basement, while I'm on the main floor. The insulation in my house is a bit lacking, I'd say!
01-14-2015, 05:30 PM   #4
Maya142
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We did MTX with a biologic (either Remicade or Humira) and it worked very well for my daughter. Considering he's gained weight and his FC is low, I would wait.

Could you increase the dose of MTX? Or is it possible he has an infection (CDiff, for example)? Whenever my daughter has increased diarrhea her GI tests for infection and if that's negative then does a FC test. It might be worth contacting his GI again if this continues.
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Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-14-2015, 05:36 PM   #5
my little penguin
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Same here
Ds just did stool samples for cdiff etc plus fc and blood work
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01-16-2015, 03:16 AM   #6
lenny
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November FCP was 24, Just got December's and it was 108 and I would not be surprised if it's even higher, now. He sees the GI on Feb 3rd and right now, they don't want to change anything.

I requested another FCP but they're reluctant. The reason being, they "don't want me to live by the numbers"

I just see it as another piece of information.
01-16-2015, 08:35 AM   #7
crohnsinct
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FC levels can vary a good deal from one sample to another so I wouldn't freak just yet about the change in numbers BUT I would also like to see a third test done especially given the goings on. This way you could see if it is a trend etc. I get what they are saying about "live by the numbers" but we are their parents and somehow a parent always knows. Besides what skin is it off their nose. It is non invasive, you take the sample and it is relatively inexpensive.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
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
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-16-2015, 01:56 PM   #8
lenny
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Our insurance pays for them, but I haven't requested them very often..every few months, if he's feeling well. I requested December's because I noticed my son wasn't eating as much, which seems to be the biggest indicator of trouble for him..not tuns of pain, just becomes hard to eat. They have accused him of possibly having anorexia on top of the Crohn's. Lol, I mean shove it! I've watched him struggle to drink a smoothie and he has no desire to be thin! I'd say that's their frustration about not knowing why he isn't feeling well.
01-16-2015, 02:42 PM   #9
crohnsinct
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That's awful! My crohnie is technically "medically anorexic". She is a swimmer and runner. Two sports that have a high incidence of Anorexia nervosA. Not once has a doc accused her of thAt. I feel so bad for him
01-16-2015, 04:26 PM   #10
DustyKat
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They have accused him of possibly having anorexia on top of the Crohn's. Lol, I mean shove it! I've watched him struggle to drink a smoothie and he has no desire to be thin! I'd say that's their frustration about not knowing why he isn't feeling well.
*Hugs*

Oh man, that sucks. Even more so coming from people who should know better.

Do many people with Crohn’s have a tortured relationship with food? Bloody hell they do and why wouldn’t they!

Do they have bouts of anorexia in the true medical meaning of the word? Of course they do!

But to imply that it has moved from this to Anorexia Nervosa is drawing a long bow and it sounds like a convenient one on their part. As you say, they can’t work it out so blame the patient. Grrrr.

Dusty. xxx
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01-17-2015, 08:45 AM   #11
lenny
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Okay, he ate maybe a thousand calories yesterday and more blood in his poop.

"So that's twice with blood?"
"Actually it's 3 times."

So bloody poop 3 times in 2 weeks. And of course, the clinic is closed all weekend.

I hate my life.
01-17-2015, 08:59 AM   #12
my little penguin
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I forget is he still on scd ?? Or peptamen? Has he been able to increase shakes vs eating food ?
01-17-2015, 09:18 AM   #13
lenny
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We quit the SCD when he came home from the hospital. It wasn't working and I thought let him eat what he wants since he has to be on MTX. It was awesome to see him enjoy food for 3 months! He HATES the Peptamen and thinks it makes him feel bad. He won't supplement with it.

We may try the SCD again WITH the MTX. I'm really hoping to avoid the biologics.
01-17-2015, 09:35 AM   #14
my little penguin
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For me as a parent I had to look at Ds quality of life .
Ds wasn't functioning well , miserable in pain hardly eating etc...
This was prior to biologics which scared the **** out of me.
That said within 6 weeks of remicade -my kid was back
He was playing running swimming eating whatever he wanted and no one knew he was a sick kid.
Not saying it was easy at all
But seeing it give me my kiddo back made it so much easier and less scary.
Knowing that the same meds are actually keeping the other extra diseases he later developed under control -makes the fact that we allowed biologics icing on the cake
I shudder to think where he would be and the physical /mental state if we hadn't.

That said your Ds seemed to be doing well on Mtx
Can he try boost or ensure ?
Sometimes a little en or EEN to boost up the Mtx helps

Paging crohnsinct

Hope things turn around soon
When they do life is almost normal
01-17-2015, 11:55 AM   #15
lenny
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I just keep reading about all the new problems biologics create. Are you saying your son doesn't have any problems and everything is 100% normal?

When I read that someone had what they considered a mild enough reaction to continue, throat tightening, chest tightening..my son would freak out and so would I.

If I could, I'd put us both in a freezer to be awoken only after there is an actual CURE.
01-17-2015, 03:35 PM   #16
Maya142
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My daughters have no side effects with biologics. No increase in infections or anything like that. No reactions, even though the younger one has been on Remicade 3 separate times. Between them, they have been on Remicade, Humira, Enbrel and Simponi, plus many different combinations with MTX, Imuran and Sulfasalazine.

Each step was scary but watching my daughters get sicker and sicker was more scary. At some point, the disease becomes much more terrifying than the medications. Now, I worry they will run out of biologics and have to keep reminding myself there are more and more options becoming available. Getting your happy, normal kid back is the best feeling in the world. Watching them in so much pain and barely making it through school, or missing weeks at a time was by far the worst.

On a different note, my daughter has been doing supplemental EN to gain weight via an NG tube. She really was against it but her GI insisted because she had lost so much weight, and now she thinks it's much easier than drinking Peptamen. We did have to switch to Neocate because Peptamen was causing diarrhea (this is uncommon, but maybe what is happening to your son?). I would try to get him to try other formulas like MLP said - Pediasure peptide is one, Boost, Neocate -- sometimes GI's offices have samples.
01-17-2015, 09:12 PM   #17
crohnsinct
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I can certainly understand trying to hold on to your current treatment. At dx my daughter was put on steroids and Remicade. Every time we tried to taper the prednisone symptoms returned. The doc said that while Remicade was doing the heavy lifting it wasn't quite getting her all the way. His suggestion was to add mtx. I asked about doing a course of EEB and doc agreed. The EEN was all she needed to get her to remission and then the Remicade took over. Perhaps the mtx needs just a little assistance. My daughter drank Boost and Ensure. We later added mtx but that was for psoriasis and psoriatic arthritis rather than Crohns.

Could this just be a flare they can be handled with a time on prednisone. I am sorry if I blanking out and not remembering if that isn't an option.

All the risk profiles of these drugs are scary. I really don't think there is one sand out that makes me say, "oooh I want that one!"

Like Maya's daughter's, my daughter has been n Remicade for 3 years with no problems what so ever and some really great progress in IBD land. So much so that qw are having a treatment discussion Tuesday for my younger newly dx'd daughter and if he says Remicade I am ready to sign on the dotted line.

Treatment decisions are hard but I have found the first step is the hardest.

Good Luck!
01-18-2015, 10:57 AM   #18
lenny
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For years, I've had a mysterious rash that comes and goes. I'll go months without any sign of it, then suddenly feel the tiniest itch..and as long as I use the cream my dr prescibed right away, I can nip it in the bud and it's gone in a couple days. If I don't, it gets BAD, worst itch EVER..

So, I had an idea yesterday. What if as soon as my son started to feel the first Crohn's symptom, he instantly switched from food to EEN? Could we nip Crohn's in the bud?

So, he might eat food half the week, then EEN, then back to food when his symptoms were gone? Has anyone tried anything like this?

I joked to my son. What if it works? What if I just cured Crohn's?!
01-18-2015, 11:11 AM   #19
my little penguin
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There have been documented studies using cyclic EEN like you described
Sometimes it is effective .
However
The most effective time is the first time after that most studies show it to be less effective each time you use it.
That was as a monotherapy though
I know happy and lilmish have used it like that before with some success in addition to other meds .

We have kept Ds on pen ( partial en as well as food) for the same reason for three years .
2-3 shakes a day 5 days a week
01-18-2015, 11:13 AM   #20
crohnsinct
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Well, the only problem with that is that by the time you have symptoms the inflammation is already there and you really don't want to cycle between inflammation and healing because you are increasing the risk of scar tissue and eventually surgery. Plus by giving inflammation even the tiniest door to slip through there is no guarantee that every time you will be able to nip it. You really don't want to give it a chance.

That said, our doc said that some people do have success cycling on and off and especially since you are on a maintenance med that could work. He has spoken with us about some positive research coming out of Isreal that involves just that (no maintenance meds even) but the food portion of the plan is a very specific diet and they haven't released those details yet. He also said some CHOP patients are doing the same with success. However, he isn't ready to trial this plan.

For us it is maintenance med and any flares treated with EEN rather than steroids. There is evidence to suggest that EEN works best the first time and that subsequent uses decrease response but we are thinking with enough time between maybe that won't happen. Luckily we haven't had to test our theory.

We have an appointment Tuesday to discuss treatment for my newly dx'd younger daughter. We will decide on a maintenance med and if he feels we also need steroids we will do EEN. Doc is on board with he plan.
01-19-2015, 11:58 AM   #21
lenny
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Doctor said my son has the non-stricturing kind of Crohn's. Not sure what that means..
More blood yesterday. Son wants to go back on the SCD today.
01-19-2015, 02:45 PM   #22
DustyKat
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There are three phenotypes of Crohn’s:

Stricturing
Inflammatory
Fistulising

That said I personally don’t believe is that simple or clear cut. A more modern thought is that due to the chronic accumulating effect of Crohn’s these descriptors are complications of Crohn’s rather than ‘types’.

I hope that makes sense!

Dusty. xxx
01-19-2015, 05:32 PM   #23
crohnsinct
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http://www.medscape.org/viewarticle/776559

A good read!

Discusses phenotypes, disease course, therapeutic decisions, biomarkers etc.
01-19-2015, 07:22 PM   #24
Robrich
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Good read crohsninct thanks.

I've had all 3 types,
Started as inflammatory DX was UC. 20 yrs later stricture with abscess. Now mostly just fistulizing in the PA.
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01-20-2015, 10:13 AM   #25
lenny
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MY son began the SCD intro diet yesterday and it may be just a coincidence, but he was definitely feeling better last night, than he has in 2 or 3 weeks.
01-20-2015, 10:31 AM   #26
crohnsinct
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That's awesome! I don't think it is a coincidence at all. I firmly believe that diet helps support their health and healing! I think the best part is that it was his decision! He knows his body and is taking his care into his own hands. How mature! Hope he just gets better and better!
01-20-2015, 10:55 AM   #27
my little penguin
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Sounds great !!!
Whatever works is my moto
01-20-2015, 10:57 AM   #28
lenny
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This is his second time on the diet. He began in April of 13' and has been on the diet all but the last 3.5 months. (When he started MTX)

The last time he began the diet, he was already in remission from EEN, so I couldn't tell if it was doing anything or not.

I want to go wake him up and ask him how his night was!
01-20-2015, 11:17 AM   #29
crohnsinct
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Haha...haven't you heard the saying, "never wake a sleeping baby"? That goes double for teens!
01-20-2015, 12:16 PM   #30
Maya142
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So glad he's feeling better!!
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