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Crohn's Disease Forum » Your Story » Methotrexate


04-15-2015, 07:46 PM   #1
Mikey989
 
Join Date: Feb 2015
Location: Upstate New York
Methotrexate

So I've been on a liquid diet for 6 and a half weeks (which has been going great) and start methotrexate(20mg) overlapping with this diet this weekend until my week 8 when I am done with the liquid diet and then stay on methotrexate. My doctors plan of action is try methotrexate for a month and if it doesn't work I go to remicade. My question is personal experiences with methotrexate, I'm very nervous that it won't work. I don't want any set backs I have my life back I gained 20 pounds of mostly muscle, I've grown, started lifting again, go to school everyday, started working again and am just living it up. Please help me out here, anyone have some experiences with this drug I really am just nervous it will be a set back, thanks!
04-15-2015, 09:37 PM   #2
Walt
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Good Day Mikey,
Welcome to the forum!
You did not mention any specifics... have you been Dx'd?
What kinda symptoms are you dealing with?
How long have you been on this bus?

I have taken higher doses of MTX than 20mg.
First I did a year of belly jabs (subQ not IM)
but now I take MTX tablets.

Straight up MTX is not, for me, a feel-good drug.
But clearly you have more going on in life and will easily transcend any downsides you may experience.
No matter how you cut the mustard, for IBD there are benefits of MTX.

For me, it is not obvious.
I am currently taking MTX in combo therapy with Biologics.
My goal in persisting with this drug is to minimize my body forming antibodies to the Biologic rendering it less effective or ineffective over time.
I have Crohn's active in both large & small and so have no choice but to play my strongest game.(best odds by the data I've seen)

MTX is quietly giving me my best chance to keep me in the game with Humira.
I've already burned Remicade (drug-induced-Lupus) eek

I do suffer dizziness, nausea & fatigue in which I suspect Metho plays a part.
But I have complex fistulizing disease and cannot seem to find remission...
Despite being cheerful & positive and determined as heck to get back to a life interrupted.

Only you can decide a more-correct path for yourself.
For me the stakes are high and I choose top-down therapy for what I believe to be my best chances.
My GI was top 5 on a world list of Crohn's docs last year.
He believes combo therapy is best for very sick folks.
I choose to stay with Methotrexate in combination with Humira for as long as it works, and as long as I can. (?)

I was recently informed that I could drop my tablets to just 15mg once a week in the hope to minimize my negative side-effects without losing efficacy.
Fresh data suggests as low as 12mg can be effective for some as part of combo therapy. (solo dose would be higher)

The only way I will really know the effect of MTX is if I lose response to Humira, we'll know that didn't work!
It is subtle and sneaky and I do not like it, but will not quit my best chance to regain quality of life.

Sometimes I think I hate it, but it passes...
and I know I have to make my best chances for my one lifetime to count.
I have a meltdown or a tantrum, blues whatever... and then get back to my intelligent health strategy in my big-boy pants.


I've got a lady cutter all too eager to meet me at ER.
She laid the concept of a possible panproctocolectomy on my plate just before Christmas.
A lil something for me to think about...
I respect the monster that is eating my life.

You have everything working right now Mikey.
I believe you will be able to dance with this drug.
You are positive and active and winning these days.

The harsh truth is nothing anyone says about a drug means much beyond that individual.
No way a little nausea lures me off of my yellow-brick-road.
My best chances are combo therapy right now and I am sticking with it for good and higher reasons.

Many times I wanted to quit.
You go through stuff, bowel disease is a process.
Thought & feelings evolve over changes and time.
If I were to allow a small thing like MTX to defeat me,
I never would have made it this far, with inflammatory bowel disease.

Some folks tolerate MTX well. Maybe you will feel Great every day!?!
I can only speak for me, I cannot detect anything good that this drug is doing for me.
But I will know darn well if and when I cannot stick with my current biologic.
I am on a surgical trajectory.
Your mileage may vary (can, will and should)

pray not for an easy life, pray to be a strong person
(if you are not comfortable substitute the word 'work' in place of prayer)

Worry will not help you with this, sorry.
For me there are no fireworks with MTX.
I will know when it is time to stop. (another drug "fail")
There are real and scary risks to learn about as you move forward.
There is a tiny chance something really bad might happen.
Doctors like to play it down, but in fairness they have no skin in the game.
These drugs can and will hurt someone.
Do your homework, the web is an unbelievable resource.
Make an informed decision for yourself.

It does not matter how the drug affects anyone else but you.
Take a test drive. See how you do.

I hope you don't... but if you do have IBD
survival is all about mental toughness and positivity through adversity.
Active IBD does damage to tissue which accumulates over time.
Most of us with it need to stick with our drugs for the long haul.
Many are tempted to quit their meds when they start to feel better.

A caveat...
when I am wicked flaring and taking 3 to 4 big drugs steady...
how can I be sure which drug is doing whatever to me?
(clearly I've gone cuckoo for cocoapops)

I wanted IBD to make some kinda sense.
Each individual case of IBD is unique.
I hoped for black & white, but alas Crohn's is mostly grey. (in Canada gray)

Don't let me scare you. These diseases range in severity and can change over time for better or for worse.
You are living it up.
You know you don't wanna lose time again.
You gained perspective when your health betrayed you.
You have the perfect motivation to overcome side effects of any drug, plus plenty more.

Mental toughness and continuing with your terrific attitude shall
carry the day!
be as well as you can be,
peace,
Walt

ps
my pet peeve:
I do not care for the term when they say a patient "failed" a drug.
If a sick person is suffering and turns in hope to a drug...
and the drug fails to help, how has the patient failed anyone or anything?
nonsense!!

if your drugs disappoint a sick person, don't blame them... apologize?
uggh!!

pss
sarcasm does not 'type' well...
my sig says I'm enjoying MTX but clearly that is just sarcasm.
__________________
currently 'enjoying' Metho, Remi gave me Lupus, Humira pens now weekly - jury still out?
whew, just a little Prednisone?

I'm starting to think Crohn's isn't as much fun as they made it sound in the brochure?

Be who you are and say what you feel,
because those who mind don't matter and those who matter don't mind - Dr. Seuss

A hard road is better than no road.

getting knocked down is nothing.
bouncing back is everything.


in the end, only kindness matters...

Last edited by Walt; 04-15-2015 at 10:14 PM.
04-15-2015, 09:48 PM   #3
Lady Organic
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1 month trial to assess efficacy of methotrexate is not enough. This drug can take few months to come into full effect and usually no less than 6 to 8 weeks. If you are in remission with the liquid diet that is awesome. I'd keep it for a little longer to give it a real chance to methotrexate. Ask for the injections over the pill version, because absorption is better when it is to treat IBD. I tried methotrexate but failed with 20mg/week. I regret not trying 25mg/week. good luck.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).

Last edited by Lady Organic; 04-15-2015 at 11:08 PM.
04-16-2015, 11:19 AM   #4
Grumpy1
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I have been on Humira since early last year and MTX for a few months, have noticed some improvement in the efficacy of my Humira on my Crohns, also helps big time with the RA that came along with the Crohns. I take it in pill form and like Walt I take it so that my body won't reject the Humira as I have rejected all of the other drugs that we have tried for my Crohns and like Walt I have it in both large and small intestine and have yet to be in remission since diagnosis in 2013. The only side effect I have noticed from MTX is a little dizziness and some hair loss. Wouldn't change it and even with the possible side effects would give it a go again. When you can walk and eat and sleep and finally after 17 months get off of prednisone it has my vote.
Everyone is different and you definitely have to decide this issue on your own with your GI, but my vote is it is worth a try. Good luck
04-16-2015, 12:03 PM   #5
24601
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Join Date: Dec 2013
Location: London, UK
Hi Mikey989!

Good to have an update from you! Very glad to hear that the liquid diet has worked for you! It's great that you are back to your normal life and I completely understand that with so much going on you don't want a setback and to have that taken away again.

In my opinion you have some choices:

1)You know that the liquid diet works for you and you could continue on it. I know it's certainly not easy but for some people it is worth it. You could decide to do it until school breaks for summer for instance and reconsider then. Or you could decide to do it for a longer period to give yourself the best shot at achieving mucosal healing - which is likely to give you the best longterm prognosis.

2)You could go to 50/50 liquid diet and normal food. This is a protocol used in Japan as a maintenance therapy and has been shown to reduce the likelihood of relapse by about half. Someone who I believe did this with good results is Tesscorm's son who started with the liquid diet for 6 weeks at a similar age to you and then moved to 50/50 and later added Remicade - and now has achieved mucosal healing (aka the holy grail for all Crohn's patients!!!)

3) Use a liquid diet as per the European protocol for maintenance which has patients repeat a course of 4 weeks liquids only every 3-4 months

4) try the methotrexate but I agree with those who say that it won't start working before you finish your liquid diet and therefore you might want to stay on exclusive liquids longer or at least go to 50/50. I also agree that 1 month isn't usually enough time to tell if it's working for most people.

My experience with methotrexate has (fwiw) been good. I take 25mg orally. That was my starting dose and when my GI had me drop it to 15mg I felt worse so we upped it again. I've had no side effects - no nausea, dizziness, hair loss or anything - and haven't needed to try the injections because of those reasons. I'm pretty happy with it all things considered because I did not have good reactions to azathioprine or 6mp. We're all different and unfortunately we can't yet predict what our individual responses will be to meds. The trial and error is not fun and I understand your anxiety. I just thought I'd share my positive experience though

5) ask to start Remicade with methotrexate. Remicade can start working more quickly than methotrexate and is good for achieving mucosal healing - better than methotrexate I believe. This would be top-down therapy and that has been shown to give the most positive longterm outcomes statistically speaking. I think it would be reasonable to consider holding off on starting these therapies for a month or two if that's a better time for you with respect to school and your social life, if you choose to stay on the liquid diet. Obviously that's my non-medical opinion but worth talking to you GI about - or getting a second opinion from another GI if you feel that's the right thing to do.

Whatever you decide I hope you get to keep enjoying living your life to the full! Good luck!
04-16-2015, 12:44 PM   #6
Honey
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Hi Mikey and welcome, I was on Methotrexate injections for 4 months which helped, but not enough. I then was on Remicade infusions over a year, and came off them as I had a reaction. However, I am now well and on a low doze of steroids for another problem. We are all individuals in our treatment and what works for us. Discuss your concerns with your Consultant and see what is best for you. Get well. Best wishes.
04-17-2015, 12:16 PM   #7
Tesscorm
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Hi Mikey,

My son did exclusive EN (liquid diet) for 6 weeks, which took him to clinical remission (ie no outward symptoms, but MREs continued to show inflammation). During the exclusive period, he was taking in 3000 cal per night (he did it overnight using an NG tube). After the exclusive period, over three weeks, we reintroduced all foods (I can give you the reintro diet if you're interested) and gradually tapered down the amount of EN. We tapered only to 1500 cal/night, 5 nights per week and he was able to eat whatever he wanted. He had only a few restrictions on his diet - no seeds/nuts, limit high fibre, no corn. I'm not sure how many calories he had during the day but I don't think he ate any less than normal (even though he was taking in 1500 cal/night). The only alteration was that he usually skipped breakfast as he woke up 'full' from the formula, he'd eat a normal lunch, normal dinner and then a large late night snack (ie pizza, grilled steak, etc.) - basically, he replaced his breakfast with a late night 3rd meal. His only medication was nexium - mainly because the NG tube caused heartburn. He did this for two years.

However, while he had no outward symptoms during these two years, as I mentioned, MREs continued to show some inflammation. At this point, his GI added remicade. Since commencing remicade, he discontinued the EN formula and using the NG tube, however, he continues to drink 1-2 Boost shakes each day.

Continuing to drink the shakes provides him with necessary nutrition in a more easily absorbed form and, at least one, study (I believe Japanese) has shown that continuing with partial EN increases remicades success.

During this time, even though it seems he was eating a regular diet plus adding all these extra calories, my son has not has any issues with weight. He gained weight until he reached a healthy level, 5'11", 170 lbs and the gain was mainly muscular/healthy.

He's now been on remicade for two years.

I have no experience with mtx but I'm going to tag Crohnsinct because her daughter was recently diagnosed and she is treating her daughter with a combination of methotrexate, on-off EN and diet. I'm sure she'll be able to give you some great advice.

Good luck!!
__________________
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
04-17-2015, 04:32 PM   #8
crohnsinct
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Hi Mikey,

I am glad you are experiencing some good results. I have two daughters with Crohn's. One is on Remicade and Methotrexate and the other just diagnosed in January is on Methotrexate as mono therapy.

O, was not achieving remission on Remicade alone so the doc wanted to add methotrexate to help the Remicade along. We opted to do a course of EEN instead and that got her to remission where she stayed for a year. It was at that point that we added Mtx but it was more for joint issues than active Crohn's.

T was put on Methotrexate (20mg sub Q injections) and given the option of steroids or EEN to handle the disease until the Mtx kicked in which for some can be up to 12 weeks. She chose EEN. At about 6 weeks her inflammation markers were all in normal range and the doc confirms that was all due to the EEN as she hadn't been on Mtx long enough to make a difference. At 6 weeks we started to taper the EEN and as others have said many studies suggest a slow taper to increase your chance of success. As a matter of fact, many also say to never fully come off of the EN but what level you should use is up in the air right now.

So at 6 weeks our GI had us bring T's EN down to half her calories and food made up the rest.

We just handed in another FC sample (week 12) and if those results are normal again, we will go down to 20% from EN and 80% from food.

No one can tell you whether or not Mtx will work. It is highly individual. What I can tell you is our doc said in his experience it works as monotherapy about 40% of the time. But if we are willing to use EN or EEN as needed to help it along we may be able to increase those odds significantly.

I think it is only natural to worry about what if a drug doesn't work but I also think it is important to remember that you are wiser now and know what to look for. You will notice when your health starts to slip a little and get on it so I don't think (barring a crazy flare) you will be back at that awful place you were at dx. Also, you are being monitored now. It is important to keep up with your blood and fecal tests as many times inflammation may show there before any symptoms start.

Good luck! You and T seem to be travelling the same road and I would love it if you kept us all posted and would be happy to answer any further questions.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
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
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