Due to go on methotrexate

I'm new to this site and love reading everyone's posts. I'm on steroids at the mo due to a flare up with my inflammory arthritis. Mt consultant at guys hospital is going to do his best to see me next weds. I have refused to go on methotrexate for a long time, but I have no choice now really. I am dreading it... Especially worried as I work full time and need to work but worried I'll be too exhausted once I start these meds. I am tired all the time now and can't afford to even cut my hours down. The other side effects worries me too.

30 Replies

  • You would have to fight me tooth & nail to take my MTX away from me...it's a wonder drug! It took a month or so to get used to it, and I feel fuzzy the morning after so try to be able to have an extra hour in bed that day. But apart from that it has absolutely no side effects whatsoever, apart from keeping my RA under control very, very well! and I've been on it for years now.

  • I completely agree. It protected the joints with oa too.

  • Did you find that your OA worsened when you came off MTX Cathie?

  • Yes it has, considerably.

  • Mine's recently started galloping in spite of being on MTX & considers my RD is controlled. I wonder if it's worth asking my Rheumy if an increase could help my OA & reduce my BuTrans patch dose?

  • there was research on arthritis research UK website about mtx and OA, they may be able to help

  • Thanks Cathie, I'll take a look.

  • nice to hear Cathy.. I had my second hip replacement (OA) in Feb this year so hopefully the mtx is keeping OA at bay

  • Hiya suzyrob. I've searched & searched for evidence that MTX can help OA & mostly all I can find is that there have been pilot studies for the use for OA in the knee (on the whole from med reports & medically detailed) but no conclusive evidence that it's actually used yet for treating OA. Everything seems to point to positive results but nothing saying it's licenced for OA as yet. Let's hope so it proves effective enough in further trials, especially for those of us who already take MTX for RD!

    Thanks to Cathie - the most concise info was from the site she suggested so this is the link if you'd like to read more arthritisresearchuk.org/res...

  • So uplifting to read a response as yours. Ive been panicking re MTX and the dangers of it. Havent really noticed anything other than tiredness and feeling low, but have not really noticed any less pain either. (but then suppose without it could be a lot worse) Glad you have your ra under control. I have only been taking for 5/6 months so perhaps its too early days yet. x

  • If you haven't had a review recently suzyrob it may be that you need either a small increase or extra pain relief/NSAID. You should have seen & felt some benefit from the MTX by now so please don't suffer. If you're not due a Rheumy appointment ring I'd ring your Rheumy nurse or see your GP & let them know how you're feeling.

  • I pray it's that good to me too. I have read some horror stories and that really worries me.

  • Read the patient information leaflet on aspirin - that's scary too! They have to tell you the worst, but for the vast majority of people who take it it's fine. It's just that we don't put up posts saying "I feel fine today" as that would be very boring.

  • That's so true

  • Welcome. 02tkwillx. I feel the same as helix. Similarly the side effects I have are a little more tired the day after I inject & not really wanting much to eat but one day is nothing compared to uncontrolled RD! I did have a little hair loss but that's pretty much all.

    I hope it works well for you, concentrate on it working & not on side effects you may not have, I think that's the way forward. I've had RD a little over 6 years & been taking MTX 5 years next month & wish now it was my first DMARD!

    My first Consultant in Spain did part of his training at Guys!

  • I agree with the previous posts. MTX has helped my RD, I do get some side effects, but I would rather live with them than leave my RD even more rampant. Most people have few or no problems, and it's such a shame that people get so worried before they've even given it a try. There are plenty of safeguards, not least regular blood tests.

    I think the biggest risk is leaving this wretched disease to wreak havoc on your joints

    Hope all goes well with you. M x

  • Thanks for replying, TBH I just worry in case the side effects cause me to give up work. It's great to read positive posts like yours.

  • Hi I started on the tablets 5 weeks ago I didn't feel too bad after the first dose. But since that I was sick 2 days after taking my dose ,I went back to my rummy and I start injections on the 9 th oct , I wouldn't give it up though the damage RA can do is a lot worse than being sick x

  • I put off starting MTX for six months because of worry over side effects but gave in in the end and was pleasantly surprised. The first couple of doses I was a bit fuzzy but after that the only side effect I got was hair loss. And it started to work pretty quickly. Unfortunately due to the hairloss I've had to come off it as it was getting too bad. As the MTX was working, I was pretty disappointed. Just started Humira. I hope that MTX works for you and you may not get any side effects. Clemmie

  • I am in your shoes too. After two and a half years of trying arava and failing that due to neuropathy side effects, low dose steroids and being on plaquenil for 12 months nothing is really doing any good. I have the added fun of having a compromised liver and having extreme chemical sensitivities, I am not even sure I can even take it yet. I have to wait until the 13th to find out from the liver specialist and then if they think it is OK my rheumy wants to put me on MTX and Imuran. I too am horrified by the side effects, my sister who has lupus had a terrible time with it so I am not confident. I am like you, I have to work full time and cannot cut my hours down. I have no sick leave left after having two cardiac ablations, kidney infection and bronchitis accompanied by severe asthma so far this year. I am quietly freaking out! :) Good luck maybe we can swap commiserative stories hahahahah

  • I had to come off mtx because of liver damage. The gastro people said lefludomide would be better but I haven't started it yet

  • I already have NASH and my levels have not been good so when I see the liver people on the 13th I have to find out of they think I can tolerate MTX & imuran. I have already tried arava and had the rare side effects, so no good for me either. I never wanted to take MTX but after 2 1/2 years unrelenting pain I am willing to give it a go if I am able to.

  • My liver people said I could take lefludomide so you might see what they say about that

  • I have been on that, it gave me the neuropathy and swelling in my legs. Otherwise it I had no other side effects but had to come off it after 6 weeks because of that. I have very few options as I am allergic to sulpha drugs too.

  • Methotrexate got me out of a very deep hole 3 years ago and I have never been as bad since. It really does get an unfair press. Okay, it doesn't suit everyone as well as it suits me but it has been around an awfully long time compared to many of the other drugs we take and has been given to many thousands of people - it is very tried and tested. You'll be tested too of course via regular blood tests that will pick up any problems before they do damage. Go for it, I say - I really hope it helps you and that you are one of the many who have no or minimal side effects.

  • Hi I've been on mtx for 3 weeks now & like yourself was concerned about starting it because of some horror story's but apart from fuzzy head & a bit of nausea I've been ok. Hoping now it's in my system will start to feel better in general. Good luck & just go for it. Michelle xx

  • I worked for nearly ten years in a v demanding job on mtx. It's a good idea to take it before weekend as the day after can be tiring. Apart from loose bowels it was ok

  • Please don't worry, I was the same as you hated the thought of going on MTX so when my Rheumy prescribed me with them after comming off Steriods I told him of my concerns.

    He put me on a low dose of 7.5mg for three weeks to see how I coped if all OK & no side effects then increased them to 10mg. I have now been on the 10mgs Weekly for three weeks I followed some very good advice & take my MTX on Sunday Mid evening so any tiredness that might be incurred happens when your asleep anyway. Whether I have just been lucky with nil side effects I don't know but my own Doctor when I spoke to him last week said that he had many Patiants on MTX but not many had any side effects.

    So all I can say is don't worry too much until you've given them a go you could be surprised like me. Hope this Helps, good luck.

  • Biologics are scarier. Methotrexate is gold standard as far as RA is concerned and all these drugs have side effects some hidden. It's always the least of two evils!

    Good luck

  • I've been taking methotrexate now for 4 weeks, no change in pain yet but it's early days. I do feel exhausted most of the time but I was struggling to work before I started. I now feel sick most of the time too especially a day after a I've taken it, but Ive lost 4lbs which is great as I've piled on the weight since I developed hypothyroidism last year and then had steroids. And ai still have my hair

    I talked to my boss and said Id probably be off sick for about 3 months while I adjusted to the meds and contacted my Occupational health department too. I'm probably in a privileged position though as I work in the NHS. However I only get a couple of functioning hours a day and rest of the time I sleep or sit in the bath.

    I'd definitely go on methotrexate - looking at posts on this site, it really makes a difference. Good luck xxx

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