Have you taken methotrexate
to treat your colitis?
If you’re answer is “yes”, please click the review button below and add your review of your experience. There’s alot of UC’ers who are wondering how other’s like you have done with the medication.
Here is an informational page from the National Institute of Health – methotrexate info page.
Copied from wikipedia:
“It is used as a treatment for some autoimmune diseases, including rheumatoid arthritis, juvenile dermatomyositis, psoriasis, psoriatic arthritis, lupus, sarcoidosis, Crohn’s disease (although a recent review has raised the point that it is fairly underused in Crohn’s disease,) eczema and many forms of vasculitis.”
A few stories from people with ulcerative colitis who have used methotrexate who submitted their experiences to the site previously:
- Methotrexate Nightmare – written by Kristin from Toronto
- Trying Methotrexate for UC – Paul’s story
- Methotrexate Update – Another story from Paul
Click the button to add your review below:
I was placed on 10mg of methotrexate per week simply to combine with the Remicade to help prevent the body from forming antibodies against the remicade. After 5-6 weeks I was realizing no response to the remicade infusions, BUT I was noticing some relief about 24-48 hours after each methotrexate dose.
Side effects were pretty brutal however. VERY tired, bad headaches, and then skin rashes on my ankles/feet.
It's now been 8 weeks since I started remicade and methotrexate and I no longer see relief from the methotrexate doses. In fact I just sent an email to my doc to let me off the methotrexate since the side effects are so crappy. At this point, since the remicade doesn't seem to be working anyway, I don't see the point to taking the methotrexate as means to preventing the anti-bodies...
I had my first colonoscopy yesterday since I was first diagnosed (7 months ago) and my UC is worse than ever!
Hi, I've been using methotrexate (injections) for at least 4 years now. For the first 6 months it put me into remission with my UC but then I flared and had to go onto Revellex (Infliximab/Remicade). My doctor has not allowed me to discontinue the use of Mtx as he says it prevents my body from becoming immune to the Revellex (Remicade) infusion. So, hope of going off Mtx was shortlived! I can't say I hate mtx as it is helping me stay in remission but I will say I hate the side effects I endure once a week. I inject in the evening and for that evening and the next day I feel a general malaise... bad mood, headachy sometimes, anxious, slight nausea, a bit fluey, foggy brain and just generally out of sorts. Drinking lots of water on the day I inject helps a lot and exercising too. I've discovered this is the way to get through it with the least discomfort although I am never discomfort free on the day I take it. You are supposed to take it on the same day every week but this is not always possible for me, so sometimes I take it after 5 days instead of 7 or after 9 days instead of 7. Once I took it after 4 days and I feel pretty lousy... but I believe the drug has to fit in with my life; not the other way around. I am already sacrificing one and half days of my life every week feeling like cr-p because of it and my life needs to function as close to normally as possible, so I cannot always stick to the once every 7 day rule. I wait for the day when I will not have to be on mtx anymore. xx
Not for me
I tried methotrexate with prednisolone (UK name). I found that it made me feel a bit dizzy and sick to start and then gave me diahorea, which to my mind defeated the object of it. I don't see it as a solution. The only thing that has worked for me, now (totally medication free) is a huge amount of energy work and talking and identifying the causes of my disease. My cause was from not being happy, stressed with losing my father, stressed from coming back from 1 years travelling and having nothing when I got back. I didn't want to start with any job so ended up spending a long long time not doing enough and wasn't achieving anything and then my father died of cancer. It shook my world and it took me three years to recover fully from my hospitalisation. Stubbornness with me unwilling to change my diet didn't help. But I've got a lot better. I now only have a problem if I drink alcohol or have too much sugar. So I've given up red meat, hardly drink alcohol, don't have caffeine, try not to eat biscuits wheat combined with sugar fatal for me! But I don't live like a monk. I no longer wake up in the night several times, or be unable to go anywhere without wearing a nappy. I don't go to the loo on the common more than my dog any more!! And I gave up all my medications against my doctors advice nearly a year ago. Had two or three lack of control situations since, rather than two or three a day! For me though, finding alternative and complementary therapists healed me. I cried and laughed on my birthday this year. To live a normal life never ever gets boring now. I am so lucky. Hope you get there too x
I hope this makes you laugh. In 2010 I was teaching second chance learners at a Polytech in Rotorua. Every Wednesday I would drive back to my family in Tauranga over the winding Pyes Pa hills. It was Winter and this could be a treacherous piece of road with black ice to take you by surprise. I was so cautious about it that luckily I was never in any trouble. (I'm telling you this so you can imagine the state my nerves were in). I would arrive home and say to the kids, "Ok, I'm going to inject myself. Don't bug me for a few minutes. Then I would go into my room. Clear a space on my dressing table. Sterilise it with alcohol swabs. Then lay out all the equipment. The drug, the needle, the receptacle for the 'dirty' needle. I would do the prep (which I can't remember at this point, so traumatic that I have blocked it from my memory), join the needle and the drug ampule together, back up to my bed, lean on it. Take a deep breath. Pinch with forefinger and thumb some fat 2 inches either side of my tummy button, (blast, which side was it last time?) (you have to alternate, left side, right side) where's the fat? find some fat!!!! Hold your breath, and jab. There. That wasn't so bad. Boy, once a week, at the same time is really hard to remember, especially when you have been on Prednisone for 3 years.
Suffice to say, I was at my worst on Methotrixate. Major accident by the photocopier. Cleared the building. Burned the knickers.
Hi there, been a member of the site for many years.
I started on methotrexate at least 5 yrs ago and am still taking it. Originally it worked quite well. I started off with injections in the cancer part of the hospital (which was a little scary) then moved to tablet form. To be honest, I don't think it does anything for me anymore, however the Dr says you might be worse off without it. In relation to joint problems.. Im 26 yrs old, and have had 2 knee reconstructions on the same leg, recently my leg had simply buckled and looks like I need ANOTHER one. Which to most Drs is just unheard of, as these reconstructions are meant to make your knee stronger and more stable than it originally was.
I really don't know how I feel about methotrexate, I know its side effects are ridiculous... joint pain is bad... But I've been told not to go off it because I might get worse.
I think I'm close to taking that risk soon... Cheers Zach
I was started on Methotrexate as a supplement to Remicade to help me achieve full remission because I couldn't quite get there with just Remicade. I recently went off Remicade due to an insurance lapse but Methotrexate is relatively cheap so I've been able to stay on it. I'm about 2 months past due for my Remicade infusion and still no signs of flaring so it seems to me that the Methotrexate is doing the job all by itself. The inject one ML once a week. I feel a bit fatigued the day after but other than that, no side effects. I also have arthritis in both shoulders but it does absolutely nothing to help the joint pain.
worked for me
I started taking Methotrexate in October 2013. My joint pain went away within weeks and most other symptoms I had also went away over time. When I first started methotrexate I was given it by needle, once a week. During that time I had some wicked migraines that I believed were from the methotrexate. In February 2014 I was put on a lower dose (six pills once a week) and the headaches went away. Now in June 2014 I have very few symptoms and have my energy back.
Methotrexate and Rheumatoid Arthritis/Colitis
I have been on methotrexate for about four months now to relieve symptoms of rheumatoid arthritis, but I am also a colitis patient and have been for the last 18 months. I take eight (8) 2.5 mg. pills once a week. The only side effect I have had is a little thinning of my hair, but it's not severe. The first few months I was very tired for a few days after the weekly dose, but the past month I am able to continue with my regular activities at all times. I have seen no difference in my colitis symptoms which I'd kept under control since my first very severe attack in October 2012. In general, my health is good, but I do take supplements, especially probiotics.
Hi all fellow uc'ers, have suffered from severe pancolitis, diagnosed since 2000, although think perhaps it began in childhood! For the last six years have had no remission and usually have two/ three emergency admissions for intravenous steroids a year. In between a constant steroid regime I have been tried with little success ( compared to side effects) on mesalazine, azathioprine, 6 mercaptopurine, infliximab and methotrexate taken orally along with folic acid .....nausea nightmare comparable only to the hyperemis I suffered during pregnancy. Felt constantly unwell and my poor son was left holding the bowl for vomit while I am sat on the toilet up to 20 times a day. Back on the steroids and they have taken a huge toll, physically and mentally but day to day living is easier than the other drugs of which methotrexate was the worst!!!!
methotrexate for UC/RA
I was dx'd 20+ yrs ago with UC with intermittent flares responding mostly to mesalamine enemas. Last yr dx'd with RA which is mod-severe. I also work in health care so aware enough of the med options to know all can be scarey but it's a risk:benefit ordeal and everyone responds differently to different meds. I minimize pred use, take oral hydrocortisone instead (a mild steroid with few SE), avoid humira, etc because of SE and relative newness. Found that mtx helps both RA and mostly UC for me but I only take 12.5 mg vs the recommended 20 d/t N/V/flu-like symptoms. Injections were even worse for me but seem better for many people. I have minimal SE with the low dose and check my liver functions monthly. Time will tell. Good luck!
MTX for UC
I was diagnosed with UC at age 19. I'm now 60. As I have aged my flares have gone from 1/year or 2 years to in later life, well, it was constant. Prednisone always worked great for my flares, always giving me remissions. Luckily, even after all those years, the only bad side effect I experienced was getting fat & round faced.
5 years ago I was without medical insurance, & tired of being fat & puffy. The free clinic Dr. recommended I try methotrexate, as so many other meds had never worked for me (I tried many of them over the years), and MTX was beginning to be used for Crohn's with success. MTX was pretty inexpensive then, thus the recommendation to me. So I started giving myself the weekly injections, and saw amazing results in 3 days! I went from bleeding and painful debilitating diahrea (flaring) to just 2X daily diahrea & no blood!! I did experience awful nausea, fatigue & flu-like feelings for 3 days after, so I started playing with stretching out the interval to see how long I could go without a MTX shot before getting sick again. Well, it must have put me into one good remission because I eventually was up to two months intervals! I had to switch to the pills somewhere in here, as the injectable became unavailable as suppliers quit supplying. (It was on the news.) After about 2 years when I finally flared again I decided the half week nausea/sickness was a bad deal for weekly injecting and used high dose pred again instead. So although MTX worked great on me, the side effects I experienced were not worth it as long as prednisone worked so good.
I became insured again, so went for a Remicade infusion try. Just as with the MTX I had almost complete remission in 3 days! and had NO SIDE EFFECTS.
So in closing, if you need to get off Prednisone or other meds that are harming you/making you sick, and are insured or can qualify for the Remi-aid, I CAN recommend Remicade.
We UCers get desperate, so try MTX if you will. ALL these meds are scary. It made my UC well but I couldn't continue with the side effects I experienced. You may be a lucky one who won't get sick, or not that bad.
I am down to 2.5-5mg/day prednisone and no longer fat & puffy. (I sure DO miss the mania & not needing much sleep from prednisone, however.) But I have learned over the years to forget about eating like a normal person, even in "remission". I mostly eat once, around 4PM. After years of conditioning I don't even get hungry until then. Then I eat as I wish & am home to deal with any consequences. If I must go out after eating I use Lomotil.
I hope this helps someone,
Caused Thinning Hair
In addition to UC, I also have CU (chronic urticaria), which is also auto-immune. When I was have a full blown CU flair, my rheumatologist prescribed Methotrexate. While it did get my hives under control, I also started losing my hair and it made my mouth all fuzzy-feeling. Between losing my hair and all of the other side effects, I decided to stop using it. It's really a harsh drug - stay away if you are able.
Horrible Drug for Me
I went on Methyltrexate after Azathiaprine caused too many adverse side effects to be of use. At the time I was on Remicade and things were going downhill. My first week, it affected my joints--every joint in my body--to a degree that I could barely move. The second week, I vomited several times and it takes a lot for me to upchuck. I had night sweats and fevers. Horrible stuff that did nothing for my UC and instead gave me arthritis symptoms. Sadly, Remicade hasn't worked for me and also caused horrible joint and muscle pain.
Back and forth
Methotrexate really worked well for my arthritis, taking 5ml once a week. It however didn't do a whole lot to control my UC. It's been a back and forth game finding what works for
my UC and then what works for my arthritis. Over the last 3 years since I was diagnosed I haven't been able to get both in remission at one point. Always one or the other kicking my butt. Methotrexate did a fine job though I would use it again.
This med is horrible. I took it for my rheum arth...had since 1983. I was given 3 tabs to take every Monday. It never made ne nauseous which is the main complaint..switch to injection if you do get nausea. I took this med many yrs ago..1980 or 90s... my liver enzymes went high abnomal 3 fold after awhile.. My dr took me off. It took awhile but the labs went back to normal. I found out 2 yrs ago that I now have early cirrhosis. they think the mtx had something to do with it. I've been on such a slew of meds though for my r/a. Shocked me since I wasnt a big drinker at all. But after hearing this...my dr said that if you take mtx...you should not have a drink esp if you're a small woman. which I am. I would not take this med ever again. when I do mention the cirrhosis..the drs ask what meds I've been on....once I mention mtx...they ask how long and that its a toxic med to the liver. I'm no dr but just giving my experience. I also have a bit of fibrosis in my lower lung base. Not sure if the cirrhosis is autoimmune or what caused it and my hep will not perform a bx until I start having problems.
I was enrolled in a research study that guaranteed I got methotrexate 25 mg (injection 1x/week)until 16 weeks. It was a double blind study so after 16 weeks I either received methotrexate or a placebo. At 16 weeks I also started taking Asacol HD. After 48 weeks, UC in remission. I did not experience any nausea. I also had to take folic acid during the study. I opted to stop the injections after the study and am currently just taking the Asacol HD. I really did not have any side effects. I ended the study at the end of January.
Last resort methotrexate
After spending 1 month in hospital in May 2013 due to severe flare and after IV prednisone and azathioprine failed to work the last resort to bring the flare under control and avoid surgery was infliximab infusions. My GI doctor switched from azathioprine which did not appear to work to a combination of infliximab and 25 mg methotrexate. I am concerned that I am on the highest dose and this worries me, I would like to reduce and finally get off this drug. My doctor has, on the result of bloods stopped the infliximab but I am still on MXT maximum dose one year on. I still take asacol granules 3G per day but would love to get off the "big guns" I have been told this drug is the last resort.
As for side effects, apart from some occasional nausea in the morning which folic acid helps improve, the only big difference that I was aware of was a severe reaction to sun (photosensitivty) whilst on holiday. I treated this with antihistamine and doublebase gel. Would love to hear if other UCers have reduced or got off MXT and how long it took them.
Keep healthly happy and positive!