Methotrexate Support Thread

[GlitterEverywhere]

I wondered if anyone would be interested in a Methotrexate Support Thread.

I have started taking it today. A bit nervous having read about all the side effects, but 8 hours in and ok so far.

They just said the dosage is 5mg per week.

I've ordered it from amazon, thanks

I was desperate to get back on it after having kids, I'd forgotten what being arthritic was like. The things I've found to help are:

Small snacking, like morning sickness, you feel sicker if you don't eat. I find high protein snacks really help.
No hardcore exercise the day after you take it.
Injections over tablets.
In the first few months you can build up as gradually as you want, I went up 2.5ml every three weeks, if side effects increased I kept on lower dose until I'd adapted.

I started taking it 20 years ago, I have so much less joint damage than the people I saw in the clinic when I was first diagnosed as a teenager.

Hello all
I’ve been diagnosed with RA recently but haven’t started my methotrexate. I’m fearful of the side affects it may bring. Generally I have good days but then when I am struck by the pain and inflammation I find it very hard and so take pain killers/have a soak in Epsom salts to help. So my question is am I being silly to not start the methotrexate? Appreciate your advice.

@oliveisme I didn't get any side effects with methotrexate and it worked really well to control my RA - I had to stop taking it because of the longer term effect on my white blood count but would go back on it tomorrow if I could.

bigfatfeet thank you for your reply. How are you now with not taking the methotrexate? Have you prescribed alternative meds? And did the methotrexate help you cope with the fatigue RA brings?

*should read have you been prescribed...

I now take leflunomide instead and it controls the symptoms as well as the methotrexate did without having the effect on my white blood count (so far). I feel pretty much normal when my RA is controlled - I know it’s scary but would encourage you to start taking the drugs ASAP - if one doesn’t work for you there will be others you can try. Good luck!

I wish all on it well.
I took it for over ten years. I had to stop owing to bowel problems. (Maybe I was unfortunate)
Sadly it did not help enough.
Back then you had little choice, it was standard part of treatment.

@bigfatfeet how long have you been taking that? Methotrexate isn't working well enough for me, 25mg weekly and rheumatologist has proposed adding leflunomide. I was put off and scared when I read the blurb. I'm really not well at the moment. She isn't able to prescribe biologics as I haven't tried two drugs so I might have to try it. Current plan is to try dermatologist as an alternative route to the biologics as I have psoriasis too, but I'm not confident this will fly.

I’ve been taking it about six months - was also terrified when I read about it and having to come off booze completely has been a bit crap but it’s working for me and have had no side effects (was advised to build up the dose gradually and I think that helped).

This is the last of the first line options for me so not sure what happens if I have to stop taking it as my joints don’t really swell so I won’t qualify for biologics, but hopefully it won’t come to that. Good luck!

My daughter takes it for her arthritis and I'm hoping to start it for my eczema. Consultant offered it as my creams aren't working like they used too.

I've been taking methotrexate for a few years now. Initially I was very nervous about side effects and how I would feel taking it. I have taken without any side effects at all and am now at 25mg a week. Definitely give it a try if possible, although it won't be the same for everyone. Sadly, its stopped working for me so its time branch out to something else.

Hi all, I started methotrexate recently and took it for around 4 weeks. I also had a steroid injection just before starting treatment. The side affects were so bad I’ve stopped taking them. My doctor knows and offered me an alternative but i declined and said I needed time to think. He did say my side affects were probably from the steroid not the methotrexate but I’m not convinced...just very confused. My pain has reduced somewhat but I don’t know what I’ll do if it returns. It is reassuring to hear of success stories with taking the drugs but I don’t think I’m there yet.

I've got two children on Methotraxate for chronic uveitis. They are 11 and 7 and I give the injections. 7 year old has been on 15mg injections for a year now, all fine and working as desired. 11 year old is having a tougher time. Lots of nausea and generally feeling rubbish, then raised ALT levels (liver enzyme) meant two breaks from treatment and has been moved from 20mg to 15mg recently. Cell flare again in one eye which is hugely frustrating. The sense of not knowing how long this will go on for is hard (already three years for eldest, although only 7 months on Methotraxate), and whether it is part of a bigger problem is also a worry. They've done blood tests and no symptoms of juvenile idiopathic arthritis but I know autoimmune conditions are still a bit mysterious and they can't be completely certain that there's nothing else. Could be many years of treatment according to consultant. Just posting in case there's anyone else with this condition, (or their child), and to gain some idea of it feels to receive the treatment. I feel for my children and wish I didn't have to inject them every week and put them through all the blood tests and appointments. Thank goodness for Emla cream and magic spray!