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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!!!
 

nogutsnoglory

Moderator
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.
 
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!
 

Maya142

Moderator
Staff member
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.
 
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.
 

crohnsinct

Well-known member
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.
 
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.
 

crohnsinct

Well-known member
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
 

DustyKat

Super Moderator
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. :yfrown:

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
 
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.
 
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.
 

my little penguin

Moderator
Staff member
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
 
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.
 

Maya142

Moderator
Staff member
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.
 

crohnsinct

Well-known member
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!
 
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?! ;) :)
 

my little penguin

Moderator
Staff member
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
 

crohnsinct

Well-known member
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.
 
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.
 

DustyKat

Super Moderator
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
 
Location
SoCal
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.
 
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. :)
 

crohnsinct

Well-known member
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!
 
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! ;)
 
Had a bit of a false start on the SCD. Son ate some Fig Newman's after I'd gone to bed. He just forgot. But, no mistakes yesterday and he was feeling pretty good when we said goodnight. No blood. :)

It is seriously hard for me to cook meat for him on the SCD, being vegan. It's like Sophie's Choice for me.
 

crohnsinct

Well-known member
It is seriously hard for me to cook meat for him on the SCD, being vegan. It's like Sophie's Choice for me.
Glad it didn't set him back too much.

Vegetarian here and my daughter goes on EEN tomorrow...her last meal pick...MEATLOAF!
 
"Less blood" yesterday. Not having AS bad a time in the bathroom, but I had him get on the scale and he's lost 10 lbs, since his December high of 151.

See the GI on 1/3.
 
Bad day. Son had to poop 6 times and there was blood. Experienced some nausea too, which is very unusual for him.

We have cases of Peptamen sitting in our dining room, but he doesn't want to drink them of course and what's the point? Even if they put him into remission, he won't stay in remission.

Think a new drug should be added to the MTX or start a new drug??

Thanks very much!
 

crohnsinct

Well-known member
Sorry to hear this! It does sound like a decision has to be made.

Either this is a flare which could be handled with steroids or een or it is time to move on to another drug.

My daughter did een when she was having a rough time and she has 't flared since so it could work but the bigger question for me would be whether or not mtx could keep him there alone.

Fwiw my recently dx'd daughter was started on mtx and doc said it works as mo o therapy only 50 percent of the time.

Good luck at your appointment
 
He was put on steroids in September (20 MG) and began to taper off right away. I was told that was a pretty low dose? It put him into remission, but it only lasted 2 or 3 months.

He was just awake, having to go again. :(
He's finally asleep now, though. Thank goodness!!!
 

crohnsinct

Well-known member
Hmmm. A flare so soon after coming off steroids? I would be preparing for a new drug. Any chance you can get doc to order fecal and blood testing before appointment so you have results when you go? Clearly, I am an inpatient sort. Maybe worth it to check for c diff also?
 

crohnsinct

Well-known member
Tell them the only numbers that you are living by is the number of bm's a day, the number of pounds he is dropping. and the number of times you see blood. :ymad:

It is time for those tests...unless of course based on symptoms they are ready for a change in treatment :yrolleyes:

Is the 1/30 appointment a regularly scheduled follow up or was that an added appointment based on the goings on?
 

Maya142

Moderator
Staff member
lenny is it possible for you to get a second opinion? Seems like your GI isn't paying attention to your son's symptoms.
 
I spoke with the dr on call yesterday and she ordered the tests. Yet, if they'd done them when I asked, we'd likely have the results by now. Honestly, things like this keep happening. His docs are always 2 steps behind me and we have to wait for them to catch up. If I compare my son's treatment to how I was treated during my (normal) pregnancies 18+ years ago, it is supremely lacking. For a year and a half, his GI could never remember that he didn't suffer from diarrhea (until now). We eventually switched drs, but it didn't seem to make much of a difference. They seem to have too many patients or something. It's over $500 for a 15 minute office visit and I expect a lot better.
 
Tell them the only numbers that you are living by is the number of bm's a day, the number of pounds he is dropping. and the number of times you see blood. :ymad:

It is time for those tests...unless of course based on symptoms they are ready for a change in treatment :yrolleyes:

Is the 1/30 appointment a regularly scheduled follow up or was that an added appointment based on the goings on?
Sorry his apt is scheduled for 2/3 not 1/3. It is his regular 3 mo apt.
 
Son is feeling much better after a day of Peptamen. Since it has helped him so much, has anyone ever heard of someone doing 80/20 indefinitely? (80% Peptamen 20% food) Not ideal, but maybe safer than using a biologic?
 

crohnsinct

Well-known member
There are so many variations of een treatment out there I am sure someone does it. Our doc is adamant about 100 percent with water only. He almost didn't give on one piece of gum a day. I just heard one of his patients is cycling on and off doing a month een a month of food.

Maybe if you are looking for a new doc for him, look for one with a lot of en experience. I think it is harder to find that as an adult though.
 
We recently switched docs to one who had worked at CHOP but he wanted to do step up and I'm told here, that's the old way. I'm confused why he's not in in the know on that. I think that on again off again Peptamen might work for my son. Might. These docs see you until you're through with college, basically, so my son has a few years, since he just turned 18. :)
 

Maya142

Moderator
Staff member
Some (many?) doctors do still do step up as long as the disease isn't severe. We went to CHOP too and they do a lot of research with enteral nutrition. The GI we saw there said she had patients who did supplemental EN long-term but not exclusive enteral nutrition.

Do you think your son be willing to drink Peptamen long term?
My daughter is 18 too and is currently doing supplemental EN via an NG tube which she doesn't want to take to college :ybatty:

Biologics do come with risks but for us, the risks have far outweighed the benefits. Without them, both of my daughters wouldn't be living close to normal lives. My older daughter went from being in a wheelchair (she has arthritis -AS) to being a normal, happy, healthy college student who even plays soccer! Neither of my girls have had increased infections or any side effects from biologics (both had side effects from MTX). If he's not doing well on MTX, it's not unreasonable to think about a biologic and discuss it with his GI.
 
I'm open to them, if I have to be. I'm just not convinced of that, yet.

When I mentioned "Top down" to one of the GI's he said, "We don't know what the long term effects of those drugs will be on these kids. We don't want to give them to kids unless we absolutely have to..and your son would have to be on it FOREVER.."

Of course, that was before the MTX (likely) failed.
 

crohnsinct

Well-known member
CHOP is one of the centers using a cycling schedule of EEN then food then back to EEN. Perhaps your doc is familiar with it or at least can contact his/her old colleagues.

As for mtx vs Remicade...once you have accepted the risks and side effects of mtx there is very little difference with Remicade. As a matter of fact, I find the Remicade the more palatable choice. I guess you just know what you know and it is hard for us to change.
 
I just went with what the team of GIs recommended afa the MTX, plus my husband was on it for a decade for RA without any problems which I thought might increase the odds that it wouldn't harm our son. Also MTX is only $19 a month without insurance. Our insurance doesn't cover MTX. I do worry that at some point, Remicade would become unaffordable for us.

Day 2 of EEN no more pain or blood. :)
 

crohnsinct

Well-known member
Remicade has the remi start program. Not based on income. You pay first $50 for drug cost they pick up the rest. Up to $8000. You still have to pay for the I fusion service but that is low compared to drug cost. We are in our third year on the program.

Maybe start the preapproval process with insurance so you have that info when decision time comes.

I can't believe they won't cover mtx. That is so weird.
 
My husband earns a high income, so I know we wouldn't qualify for any help, but our insurance will pay for Remicade, yet I'm not worried about affording it now, more down the road. I don't know how Obamacare will effect our son..it's just an additional worry with the expensive meds plus, I will be honest and say that I feel guilty about using them.

Why do they cost so much? By using them, are we burdening others significantly? Who is paying and who is making 15K a pop?
 

my little penguin

Moderator
Staff member
Remistart andmy Humira are not government programs
In fact if you recieve medical assistance of any sort -you are not permitted to use it.
Remistart my Humira programs are paid for by the drug companies
Since they get the majority of the money from your insurance it keeps people on the drugs so the companies can continue to bring in come from various drugs ( biologics in this case)
Remistart will not cover anything if you don't have insurance;)

However if your kiddo is considered disabled due to inability to work then medical assistance covers it otherwise your kiddo would be working and that insurance would cover it plus remistart to off set the costs .
 
Are there poor people here who are receiving their Remicade, free of charge, same as paying customers in the US? It's possible that my son may be poor and without health insurance one day.
 
We wouldn't qualify if it was income based but since Remistart and my humira aren't then no issue.

My son will come off our insurance at 26 then it may be a different story and I do worry. I've often said when he looks for a job he will more often have to base his decisions on their benefits package over salary.

But there are programs that are income based for these medications. Like when you are px'ed humira their ambassador program goes through everything. The person we talked to said they have programs like My Humira for commercial insurance and then charitable and needs based programs otherwise. But since we do have insurance she didn't go into detail about those other programs.
 

crohnsinct

Well-known member
I don't know about where you live but where we live my daughter's GI always tells me that the state insured patients often get better coverage than the private insurance. Many of the patients are on medicare. They get all their levels tests covered no problem. That is a $2,500 test. The private insurance companies won't even approve it much less pay for it.

I can what if things until the cows come home. I can only control what I can in the here and now. So if there is a med and a way to help my daughter stay her healthiest now, I will do everything in my power to do it.

Who knows what will happen in the future and by then there will be a whole new class of drugs.
 
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My husband plans to retire in 3 years, which would leave our son without health insurance at 21. Right now, we plan to continue to purchase it for him for his life time, but things don't always go according to plan.

We live in Colorado.
 
CHOP is one of the centers using a cycling schedule of EEN then food then back to EEN. Perhaps your doc is familiar with it or at least can contact his/her old colleagues.

As for mtx vs Remicade...once you have accepted the risks and side effects of mtx there is very little difference with Remicade. As a matter of fact, I find the Remicade the more palatable choice. I guess you just know what you know and it is hard for us to change.
My son's dr. quickly agreed to give the month on/month off a try.
 

crohnsinct

Well-known member
Cool! I hope it works for him!

FWIW when the GI said mtx for T, my husband said, "and she will be on that as long as it works?" and the doc said, "let's see" I have some inside info that he is using the cycling schedule with a least one other patient so maybe he is thinking get T to good solid remission, scope and then give the EEN/food thing a go or maybe that is just me playing out guess the GI again. :ylol:
 
I'm so glad you have a plan.
I'm sorry if I missed it but what is one month on and one off?
I assume it means one month of een and one of food?
With the een does your GI allow broth or food of any kind.
 
This GI said at CHOP they found 10% food to be okay during EEN, but my son and I don't want to risk that, plus he feels better when he's 100% one or the other.

The plan is to do this without meds..the MTX didn't work, so it's gone.
 
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