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Crohn's Disease Forum » Treatment » Methotrexate » Methotrexate Support Group


 
05-09-2014, 07:34 PM   #1
girlygirl
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Methotrexate Support Group

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Personally I've been on methotrexate injections for over a month now. Following previously talking the pill version. I would love to hear from others also on methotrexate. My rheumatologist initially put me on mtx for my CD and arthritis induced by CD.

How are you feeling? Any side effects? Any benefits from switching to mtx from other meds.

The fatigue is one of my major side effects.

How does this affect you or your loved ones?

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05-11-2014, 07:23 AM   #2
Sailorluna
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Hi,
I would love to hear the same. I am about to switch to methotrexate from azathioprine.
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3 fistulas
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methotrexate weekly
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05-11-2014, 04:22 PM   #3
Trev
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I know a lot of people swear by methotrexate, but I had bad side effects, after 12 years of Aza, it stopped working and I switched to methotrexate, I started having blurry eyes and after 1 month of taking it, I had a blood clot in my right eye and lost my sight. I phoned the people who make methotrexate and was told this was a known side effect, but they wouldn't say how many people it had effected. all the drugs we take have bad side effects and I wish I had been better informed years ago, I may have made different drug choices.
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05-12-2014, 06:33 AM   #4
SupportiveMom
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Wow never heard of the eye issue.

My kid is on the Mtx+ Humira combo but it looks like soon we are switching Mtx to Imuran. Mtx hasn't made much difference for her. She has been on it for a year now after a has reaction to Remicade. We were hoping adding Humira would be enough but the combo isn't working for her. No side effects for her. Its the one drug she is taking I don't see the adverse affects.

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06-06-2014, 01:29 AM   #5
theOcean
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Hey everyone, I've been off of Imuran for a bit because of side-effects, and my GI wants me to consider another immunosuppressant -- which means I'm likely moving to Methotrexate. In terms of side-effects: do people seem to experience less if it's taken orally versus injected? Or does it still seem to be very much up to the individual?

Basically, I'd just like to avoid losing my hair again.
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
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06-06-2014, 02:45 AM   #6
Droopy Drawers
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My GI started me with a series of 4 weekly injections & then switched me over to tablets

I mentioned increased joint pain & hair loss to both the GI & my Rheumy & after a discussion between the 2 was put back on weekly injections & 2 mg Folic acid daily

Just had blood work & no signs of kidney or liver probs

Rheumy also wants to add Humira, but I really don't want to add that just yet
06-11-2014, 07:24 PM   #7
CrohnsKidMom
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My son is on MTX injections and is doing well. The GI would not let him take the oral pill, as it is hard on the digestive tract. My son had some mild side effects early on-tiredness and loose BMs, but no hair loss or nausea. I hope MTX works well for you!
06-12-2014, 06:54 AM   #8
SupportiveMom
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Ocean since you are used to the needles for Humira I would do mtx injections. You already know how to do subq injections & the mtx are way easy compared to Humira. My d doesn't even fuss for them. Hear its more effective too.

06-12-2014, 07:11 AM   #9
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I'm on 15mg a week and it's stopped working! So now it's just being used to try stop anti-bodies while I'm on Remicade. I'd love to be off it 100% because the injections make me want to be sick
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Crohns Disease diagnosed September 2012

Liquid Diet via NG tube 3 1/2 months
Aza: Failed/Pancretites
Currently on Methotraxate/Folic Acid/VitD/Calcium
Methotraxate is also currently failing me

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06-12-2014, 06:02 PM   #10
Droopy Drawers
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I'm getting 25 mg im weekly
Rheumy wants to add Humira to the mix

Also taking Pentasa 500 mg 8 daily
Folic acid 2 mg daily
Vit D 5000 mg daily
B12 injection monthly

And still feel rotten

Just diagnosed with basal cell carcinoma on my face & need to have it surgically removed
06-12-2014, 06:04 PM   #11
Droopy Drawers
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I'm getting 25 mg im weekly
Rheumy wants to add Humira to the mix

Also taking Pentasa 500 mg 8 daily
Folic acid 2 mg daily
Vit D 5000 mg daily
B12 injection monthly

And still feel rotten

Just diagnosed with basal cell carcinoma on my face & need to have it surgically removed

Last edited by Droopy Drawers; 06-12-2014 at 06:04 PM. Reason: Dup
06-16-2014, 06:35 AM   #12
SupportiveMom
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The combination can really help but takes a bit to kick in. The Humira+Methotrexate didnt work for my kid but its looking like Humira+imuran might be. I hate her taking all of the meds but if we might see remission after 2 years from it I will be the happiest mother ever!

06-17-2014, 07:43 PM   #13
kromom1
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I've been taking MTX injections for over a year. It works pretty well for me, controls my gut pain. Of course I'm still on prednisone (can't seem to get below 5 mg without my symptoms coming back). No side effects that I can specifically link to MTX. I really need to get off the prednisone, though, as it has caused diabetes, so I'm going to try vedolizumab as soon as my doc's office can get it approved.
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Diagnoses: Crohn's 8/07; steroid-induced diabetes 11/07; Remicade-induced Lupus 02/09, shingles 7/10, and hypothyroidism.
Medications: Entyvio, Methotrexate, prednisone, Protonix, Synthroid, fish oil, calcium, multivitamin, glimepiride. Failed Pentasa, Entocort, Humira, Imuran, 6-MP, Remicade, Tysabri, and LDN.
06-18-2014, 01:22 PM   #14
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I took methotrexate for awhile, probably like 6 or 7 years, and just got off it within the last month. Initially I was taking as injection, since I was a kid and my doc worried about absorption problems. I hated the injections, they made me feel nauseous for days, but blood tests were better so we stuck with it. Then after years of begging, my doc let me switch to pills, first 10 pills then down to 8. They still made me feel really nauseous, and the day after taking them I usually didn't eat. They helped blood tests at first, but eventually nothing got better so I was finally able to get off it, which was a relief for me. It affects everyone differently, and I just could never get used to it. Hope it works out well for you, best of luck
08-15-2014, 04:19 AM   #15
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I have now had my third methotrexate injection (20ml) and so far so good. I am still on prednisone taper as well though so have to wait and see how it goes long term. Have already tried Aza and 6MP both made me sick and my liver couldn't cope. Doc wants me to change to oral methotrexate after one more week so hoping that will absorb ok.


Update:29.10.2014

I would say I have had mixed results from methotrexate. I have been on oral 20mg one a week for 2 months now. I have not had any noticeable side effects as such but have been sick a lot with the flu and a tummy bug so bad I was in hospital for 4 days. Have still had mild Crohn's symptoms and only been of prednizone for 1 week.

Last edited by liscol; 10-29-2014 at 02:15 AM. Reason: update
09-01-2014, 08:29 AM   #16
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Hello, im new to this support group. Was wondering if anyone has had any extra with mouth sores on methotrexate? I have several right now and thete really painful. Can they get infected? Is this something to worry about or no big deal?
09-01-2014, 10:48 AM   #17
Sailorluna
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I had more mouth sores before mtx. Just from the crohns. There is an over the counter mouthwash from oral b for mouthsores that seems to help.
09-01-2014, 10:59 AM   #18
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Hello, im new to this support group. Was wondering if anyone has had any extra with mouth sores on methotrexate? I have several right now and thete really painful. Can they get infected? Is this something to worry about or no big deal?
Was canker sores an issue before starting mtx?
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09-01-2014, 11:03 AM   #19
aimeey17
 
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Was canker sores an issue before starting mtx?
Yes I'd get a canker sore here and there but right now I have like 10 of them and they really hurt it even hurts to press on my cheeks from the outside. Two of them are on my gum and im worried they could cause a dental issue. Is it possible for these things to get infected and csuse bigger problems or are they just annoying but harmless?
09-01-2014, 11:12 AM   #20
Farmwife
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It also might be a sign of the mtx not being strong enough to keep you in remission but only a doc can tell you that.
My dd uses magic mouthwash thats a prescription. Works wonders.
09-18-2014, 12:24 AM   #21
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I am so sick, the dr I've had for almost a year hasn't treated me dispite the many tests that show advanced crohns and ibd. I feel like I'm dying, I hurt so bad. I cry daily, I just can't fight this battle anymore.
10-09-2014, 07:47 PM   #22
Jay Woodman
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Methotrexate has just been recommended along with Remicade to help prevent antibodies from developing. I hope to understand more about Methotrexate with the help of the Forum..
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10-16-2014, 06:56 PM   #23
Jay Woodman
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This U.K. Article provides an excellent informative backgrounder on Methotrexate. The link wouldn't work but if you google the following highlights it may help locate the article...

U.K. National Association For Colitis and Crohnís Disease

Drug Treatment
Information for patients with Inflammatory Bowel Disease
Improving life for people affected by Colitis and Crohnís Disease
Methotrexate
10-26-2014, 05:51 PM   #24
Tony H
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just took my first dose of mtx a few hours ago , 10mgs (4x2.5) here's hoping for success and no side effects (I'm an optimist) .
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10-26-2014, 06:08 PM   #25
Jay Woodman
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just took my first dose of mtx a few hours ago , 10mgs (4x2.5) here's hoping for success and no side effects (I'm an optimist) .
Hope you do well with the Methotrexate. I've decided to start mine on a Monday night..just thought I'd separate it a little from the weekend..Ive been prescribed 5X2.5. I wonder what the rationalization is for the dosage prescribed...Guess that means more reading for me : ) Any reason in particular for your day of the week?
10-27-2014, 06:03 AM   #26
Tony H
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Hope you do well with the Methotrexate. I've decided to start mine on a Monday night..just thought I'd separate it a little from the weekend..Ive been prescribed 5X2.5. I wonder what the rationalization is for the dosage prescribed...Guess that means more reading for me : ) Any reason in particular for your day of the week?
I started mine on Sunday because we have a nice meal normally on a Sunday so if I was going to have any bad reaction I wanted to have a nice "last supper" , I'm on 10mg for the first 4 weeks and 15mg after that.


PS so far so good no bad reactions and hope you have no problems as well Jay
10-28-2014, 08:22 AM   #27
Jay Woodman
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@Tony...Thanks so much for the optimism! I took my 5X2.5 Methotrexate last night & am here enjoying a green tea this morning : )
10-31-2014, 08:48 PM   #28
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Hi I'd like to share my experience and some infos about methotrexate, which i took for about year, by weekly injections (20mg).

I was lucky enough methotrexate didnt cause me any (known) side effects, well except a bit of hair loss at the beginning.

Methotrexate in the context of an IBD, could be better absorbed via Injection route. I have a pharmacist who works in team with my GI and who specializes in IBD research and treatment. She insisted I got the injection. In the context of arthritic disease (i.e Rhuematoid Arthritis), pill version is the norm. Injections are not painful and are easy to make. They are not fun of course, but ok. I was pretty nervous the first few times, but after, its very easy.

It is important a trained nurse should help for first injection, as there are many little details. If I remember correct, it is also said injections have less possible gastro-intestinal side effects.

There are some variations in methotrexate injection list of ingredients depending on which company produces it. If you would like to avoid extra conservatives inside, its possible to call your pharmacy and inquire about ingredient in the composition of the drug and possible options. I did that and I had my injection delivered every week at home instead of once a month, for the same price, minus some of the conservatives! This initiative was a personal choice and not a recommendation from a specialist. Its also possible to make your own seringes right from the vials to avoid extra conservatives, but because of particules that can be launched in the air around during manipulation and inhaled by the rest of the family or pets, pharmacists will prefer we have the seringes prepared in a pharmacy where technicians use protective suit and ventilation equipment! I found the best way for me was to have it made magistrale by my pharmacy and delivered everyweek.

also regarding Folic acid, which should always be taken during treatment with methotrexate, there are different dosing protocols. my specialized IBD pharmacist clearly mentionned not to take Folic acid the day BEFORE and the DAY of methotrexate. It should be taken depending on dosing prescribed, the day after or remaining days of the week, if on a low dose continuous daily schedule.

I hope this help.

Im wishing you a good journey on methotrexate, really feel sorry for Trev who has had a really bad experience. Unfortunately, methotrexate has prouved to be ineffective in my case as my recto-colitis is flaring right now. Im back on purinethol for a 3rd time, hoping blood counts will be great this time around.
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Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
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past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).

Last edited by Lady Organic; 11-01-2014 at 12:26 AM.
11-01-2014, 07:16 AM   #29
fissure2
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I got my first injection 25mg this past wed. I am also on humira, I hope this combo works, its been 5 months of flare now.
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11-03-2014, 01:01 PM   #30
Tony H
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Hope you have good results with the mtx fissure2. ,
Took my second dose of mtx yesterday , was fairly tired all day today ,hope it wasn't the mtx
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