Methotrexate for RA

[MaureenMLove]

Just been put on methotrexate, to go with the hydroxychloroquine that I'm already on for RA. How bad is it? Are all the side effects and scary do's and don't' just to put the fear of God in me and to cover the backs of HCPs?

Obviously, I am going to adhere to everything, but just to feel a little less scared witless by it all would be good!

I’ve been on it (on and off due to pregnancy) for over ten years. Never had an issue with it. Love that I only have to bother taking it once a week, even if I feel a bit sick for the 5 mins or so it takes me to get to sleep afterwards. What were they saying to scare you?

I started on highest dose MTX tablets for my RA but struggled terribly with the side effects, I was then put on the injectable MTX to try help with the issues I was having and although it was a but better I had to come off it completely (I also take leflunamide, Sulfasalazine, hydroxychloroquine among lots of others) when I developed horrendously severe mouth ulcers (whole mouth covered) with Internal ulcers, kidneys were affected and I couldn't eat due to the metallic taste. While I was on it, it did work though frustratingly. I now have to take the biologic Enbrel, I'm fast running out of medications so I'm hoping this keeps working for quite some time.

My story is full of horrors from MTX but it's a great drug and is a miracle drug for so many so it's absolutely worth trying. If you have issues you can switch to the injectable so keep that in mind. Good luck

My late dad took that for his Rheumatoid Arthritis, and it was the only thing that helped him. He didn't have any side-effects with it

DH has side affects with it - just so different for everyone!

Thanks for your replies. I don't know what exactly scared me to be honest.

I think it was just the way my consultant listed side effects and told me I had to inform her immediately if I had any. And then the fact that I must have a bloody test every2 weeks for 6 weeks, so I can be closely monitored for any changes. She also told me I had to go straight to my doctors if I got a cough. And that she's prefer me to take it in the evening, as if I have any side effects I'd be at home and not potentially at work or anywhere else.

It just seems so, grave, almost!

On the upside, the rest of me is 100% healthy. She listed all the tests results that had been done prior to making the decision to give me methotrexate.

I didn't start taking it last night in the end. I'm on my own, as DH is away and DD was working and staying at boyfriends. I didn't want to get any side effects and have to deal with them on my own.

Typically, for the first time in months though, I've woken up with a trigger finger and one trigger too!

I take it with hydrochlroquine, I have side effects, nausea, metallic taste, mouth ulcers but they come and go. It’s only been 5 months for me and it isn’t really working that well yet but it’s a long game. Give it a try, plenty of people are fine on it. I haven’t been ill at all and I have a young child. Good luck

For DH it really works (he has PA rather than RA) and the blood tests are mainly used to check the markers to see if he is improving on it.

The worst side affect for him is the tiredness but it's also a side affect of his illness...This time and lathe previous time his pain started to improve and the swelling reduce within a month.

I hope it's success for you

I understand your fear I’m not on methotrexate yet but I’ll be starting in the next 3 months and the side effects do sound scary. When I do start I’m going to take it on a Friday evening I think so I’ve got the weekend just in case. Try not to worry though according to the leaflet severe side effects only effect a small percentage of patients so we’ve both got a high chance of worrying about nothing and being absolutely fine!

Hello. I’ve been on it on and off for 20 years. I only get mouth ulcers if I don’t take a lot of folic acid. I do better on the injection than the tablet. I’m tired the next day if I take the higher dose. There is a good Facebook group for RA called healing naturally with rheumatoid arthritis if you’re interested. Lots of people on there do drugs & ‘natural’ things in combination.

That sounds interestingHedgehog, thank you. I'll look at that Facebook group.

Autoimmune section on here is a bit hit and miss I've found!

My feet are still really stiff this morning and my finger is still bent over. So that's about 3 hours. (Yes, I've been up that long!). It's almost like I'm being told to get on with the medication! Yesterday, at the appointment I was fine! She felt all my joints and said that clearly the last steroid injection had helped and today is dreadful!

The bloods go down quite quickly to once every 3 months which is fairly manageable. I was always told to take it before bed (so if you get side effects you’ll be asleep). The main thing is the nausea, but that’s a bit better for me if I don’t take it on an empty stomach and take it with loads of water. I’ve only had abnormal bloods on it once- my white blood cell count went very low. In retrospect I was very hit and miss taking the folic acid around that time and since I’ve set an alarm to remind myself to take it it’s been fine. For me the nausea is always away by the next morning so it’s really just from I take the tablets til I go to sleep. I tried the injection for a bit but I thought it was worse, less nausea but it lasted for 2 or 3 days and I felt generally unwell, as if I’d had a flu jab or something. Tablets are definitely the lesser of 2 evils for me. And they work. Hope you get on ok with it!

I was on methotrexate for about 2 years. At first the side effects were pretty awful. Mainly nausea, upset stomach and the most awful tiredness.... About a day or two after each dose. Only really settled after about 5/6 weeks, well all except the fatigue. One of the major, major downsides for me however was the immunosuppression. Especially in a public facing role, I caught everything going and took longer to recover.

Came off it about two months ago, now on humira. Thankfully no side effects. Good luck. Everybody is different and it may not be so bad for you. Hope I didn't scare you too much. X

Right, I've taken my first dose. 9pm. Alarm set for every Monday at 9 for methotrexate and every Wednesday at 9 for folic acid. So far, so good.

I'll need to email my health & safety officer, as I've just remembered one of my jobs is the senior first Aider in a secondary school....! Might need to restrict what I deal with! Bit of a bonus I suppose that I can hand on heart say, 'no sorry, I can't deal with someone who's been sick!' . There are 10 other first aiders, so they'll just have to get on with it and I'll stick to cuts and broken bones.

Bravo! I was scared before I started too. But it's been a blimmin wonder drug. Totally revolutionised my Illness. Good luck

I was on it for a few years and refuse to ever go back on it. I felt worse than not having any medication at all. However we are all different and you may be fine

I have slight nausea the following day after self injecting. I've had very few flare ups since taking it.

This is so relevant. I have just been diagnosed with early stage PSA and been given Methotrexate. However I don't think I'm brave enough to take it.
The reasons I have are - I need to be 100% capable of functioning 7 days a week - 3 children and OH Is often away. Every single day I need to drive a minimum of 50 miles to and from activities/work/school as we live in the middle of nowhere and I have nobody to help. Any side effects from like tiredness or sickness will make life impossible. The most down time I can plan for is a couple of hours. I'm on duty from 5am to 10pm.
Secondly I understand there is a high risk of depression - I am on anti-depressants that I can't kick. I am very very nervous of that.
The thought of being on an immuno suppressant also worries me. Again 3 children and an office full of bugs - I also spent 7 hours a week at a swimming pool AKA germ factory. The guidance I read said if you so much as spend 5 minutes in a room with a child with chickenpox you can be at high risk even if you've had chickenpox. That kind of immunity is unworkable for me.
Also I worry about the well known hair falling out.
I haven't been given an alternative so I think I am going to have to stick with the pain. However, it would be great to hear whether any has found any of the above to be issues - I may well be over anxious!

Things is it works on reducing the swelling, that pain and swelling is damaging your joints...

I really think better to try it?

I have been taking it for 4 weeks now and I think my feet are starting to feel better. I haven't had any side effects at all. I guess you need to decide just how bad the pain is and how much it's impacting on all the things you do.

All the side effects do sound bad, but you will be monitored so closely over the course of the first 6 weeks or so, if it isn't working for you, then you can stop taking it.

It's got to be worth a shot.

(Remember this is my thread and the OP has exactly the same fears and worries as you!)

MaurenMLove - I'm sorry it was very rude of me to barge into your thread. It felt tidy minded to keep all comments on one subject on one thread - I kind of panicked without thinking and posted here.
I also realise my comments may be v unhelpful for you. Sorry again.

Glad to hear you are getting on OK and a good point that you can always stop if it doesn't work. Thank you

Gosh, only just seen this. Please never apologise to me about posting on a thread! Life is too short to care who posts where on here. You're absolutely right, makes perfect sense.

Hope everyone is doing ok. My medication is ok. I would say fair to middling! Been better, but also been do much worse. Not sure if we're aiming for completely pain free or 50 year old normal pain free!