Ulcerative colitis/arthritis - methotrexate - NRAS

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Ulcerative colitis/arthritis - methotrexate

Mgenevieve profile image
24 Replies

Hello. I have had ulcerative colitis for 22 years and have now developed arthritis. Am starting methotrexate 10mg weekly and am worried about this drug but understand I need to take it. The pain from the arthritis is very restrictive and I have a physically demanding job. Would be very interested to hear some positive feedback. Thank you in advance G

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Mgenevieve profile image
Mgenevieve
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24 Replies
helixhelix profile image
helixhelix

For me it is a great drug. I have been on it for 7 years now and have no side effects. More importantly it has given me my life back, as my RA has been in remission for the last 5 years. It's always scary starting a new drug, but do remember that you can stop taking it if it doesn't suit you.

Mgenevieve profile image
Mgenevieve in reply to helixhelix

Thank you ! I would really enjoy some remission from the arthritis so I’m going to give it a shot. Your + feedback means a lot

NeonkittyUK profile image
NeonkittyUK in reply to helixhelix

My thoughts exactly! Good luck Mgenivieve.

oldtimer profile image
oldtimer

There will always be more posts on here from people who are having problems, but there are also many people who are well controlled with few problems.

Mgenevieve profile image
Mgenevieve in reply to oldtimer

Thank you. I am trying to only ask for + feedback.

nomoreheels profile image
nomoreheels

Of all the DMARDs methotrexate is the one we have more questions about, particularly when, like you, it's first prescribed. You will read varying thoughts on it depending on how well (or not) people have responded to it but bear in mind forums aren't the best place to get a true perspective as many use them for when they have troubles. I think it's great, I started it after hydroxychloroquine started to be less effective 8 years ago. I have no side effects of note, I'm a little tired the day after & less appetite though when I first started it I had a little hair loss which settled pretty quickly, only my hairdresser & I noticed to be honest. I've also tried double therapy with both sulfasalazine & leflunomide, they both caused me more trouble than MTX.

You're starting on quite a low dose, that could be because your Rheumy intends to increase it over a few months or that it's all he thinks you need for now. Some take all the tablets in one go but I took my initial 15mg dose through the day with meals, 2 tablets with breakfast, 2 with lunch & 2 with my evening meal. Remember to take your folic acid as your Rheumy recommended, they're intended to ease any side effects you may have. Initially I took my one folic acid the day after then that was increased to the day before as well which solved the hair issue. I now take 6 a week, my Rheumy prefers all her patients on MTX to, I inject MTX & my dose is 17.5mg. Do ensure you drink plenty of water, particularly around MTX day, it helps.

A read of this might cover some of your concerns creakyjoints.org/treatment/...

Mgenevieve profile image
Mgenevieve in reply to nomoreheels

Thank you ! I will take the advice of splitting the dose to minimise reactions after anaphylaxis on Imuran a few years ago. I appreciate your response. All the best

nomoreheels profile image
nomoreheels in reply to Mgenevieve

I hope it helps you too. Actually the bioavailability is greater taking in split doses rather than one dose too so you get more for your money!

NeonkittyUK profile image
NeonkittyUK in reply to nomoreheels

Good article thank you x

nomoreheels profile image
nomoreheels in reply to NeonkittyUK

Isn't it? You ok Julie? x

Mgenevieve profile image
Mgenevieve in reply to nomoreheels

Thank you also for the link to the article. Certainly puts some perspective on things.

nomoreheels profile image
nomoreheels in reply to Mgenevieve

You're welcome. I only hope your worries are unfounded & it works as well for you as it does for so many of us.

Mall profile image
Mall in reply to nomoreheels

Thanks for posting the link, I advise everyone to click on it. I have Just read this article for the first time. So well written and informative. Methotrexate has been a godsend for me and has helped stave off too much permanent damage. It has been the backbone of my cocktail of drugs for many years.

nomoreheels profile image
nomoreheels in reply to Mall

Good analogy, MTX has been my treatment backbone too & equally staved off too much damage. I did wonder if the article merited being posted in full.

popsmith1874 profile image
popsmith1874

Hi I've been on Methetrexate for 3 years and it's been a good drug for me , I've tried sulfasalazine and hydroxocloroquine along side but they haven't worked so am on Benepali now along side it but I think the Benepali is starting to falter so I had a steroid injection to see if things settle down, but for me Methetrexate has been good

Mgenevieve profile image
Mgenevieve in reply to popsmith1874

Thank you for your positive reply. Good luck with further treatment.

Nettac profile image
Nettac

Hello

I've just started taking it (5 weeks). I've been a bit sick, particularly day after taking. However the difference to my agonising knees is remarkable. Up until a few weeks ago I was on crutches!

My mood is s bit off, so I've kept the dose low for a bit longer. To be honest the side effects are nothing compared to the relentless pain. I couldn't have gone on much longer like that.

So not perfect but it's early days for me. Those side effects may go. Either way, I'm glad of less pain. Like you I was extremely anxious about starting and put it off for ages. You just have to try.

:)

Mgenevieve profile image
Mgenevieve in reply to Nettac

Thank you for your feedback. I was going to put it off until Monday, but I will start today, I have put it off for long enough always finding an excuse....

Like you I will focus on the potential relief that it will provide :) Good luck.

Nettac profile image
Nettac

Sorry..I'm also on 10mg. To be increased slowly

Kai-- profile image
Kai--

.

Supplemental positive perspectives 👍 , Mgenevieve, from videos 📹 towards bottom of page ( healthunlocked.com/nras/pos... ) starting with Dr. Andy Thompson 👨‍⚕️ down to NRAS’s 'Using Methotrexate - All you need to know'. 👍👍

Very best wishes to you, Mgenevieve. 😌 🙏 🍀 🌺 🌞

.

Mgenevieve profile image
Mgenevieve in reply to Kai--

Thank you Kai, much appreciated.

Nettac profile image
Nettac

Good luck. I'm sure it will be fine. You may have s few issues to start but it's worth a bash.

Twitty999 profile image
Twitty999

Hi mgenevieve..I started this Rhumatoyd journey 8 months ago starting on 10mg MTX tablets Working up to 25mg 8 weeks ago by metoject self injection pen, which seems now to be working, I've never had a bad reaction to it , only bouts of extreme tiredness which I just give in to😴 I've got some blisters on my lips this week not sure if it's a side effect butility I can cope with that compared to the knee & hand painted I get without the MTX. I'm so glad I opted for the metoject pen..it's so easy. ..good luck x

Mgenevieve profile image
Mgenevieve in reply to Twitty999

Thank you for your positive story. I'm still waxing and waning (still finding excuses to start tomorrow instead of today!) but feel I'm getting closer and as you said it certainly would be nice to not have the pain of the arthritis. I must ask my doc about the injection, it seems it may have advantages over the tablet esp in regard to the UC. Good luck with your ongoing treatment :)

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