is anyone taking methotrexate? have any of you had any side effects and has it helped you?

[tara0606]

[Shell1967]

Hi Tara.im very new to mtx,today was the start of week 5.apart from being slightly more tired,and a couple of episodes of upset tum,I have been absolutely fine.how ru doing ? Well I hope take care Michelle xxx

[helixhelix]

Hi there, Methotrexate is the "gold standard" treatment for RA, and has been used for a long time. I'm on it myself, along with 2 other DMARDS, and its made a huge and positive difference to me. I could hardly get out of bed before I started it, and am now able to do just about everything I want to. Had a few side effects to start with, but they went after a month or two. So tho' it sounds like a scary drug it can be brilliant! Polly

[tara0606]

ive had ra for 20 years all my life they wanted to put me onit when i was about 8years old but my rhemtoligist decided not too im having really bad flare ups at the moment with 4 joints affected i can deal with it but the pain is disturbing my sleep aswell as the stiffness and aches i had to give up my dream job of hairdressing but still gunna finish off my last year because i love it that much the tiredness was awful when i was working and know i got to have surgery on one of my knees because theres cartiladge damage and i feel like a 95 year old woman i cnt realli do much at all nothing like all my friends and enjoy life like i should b doing its getting me down soo much im sorry if i sound like a moany old woman but hey ho i have to get on with it the one thing i am worried about methotrexate is the side affects and will it work on me or not? whats the difference between the tab and injections

hope you are all good and thanks for commenting

tara xxx

[becky26]

i was diagnosed with RA 3 months ago. i was on MTX tablets but the side effects made me very ill so iv switched to the injections 3 weeks ago. im still getting nausea and occasional sickness but hoping it will die down soon. the effects are good though my joints are not as swollen and mnot as sore so defo worth a try.

[helixhelix]

Hi again Tara, really sorry that you've got this disease at your age, that's really rough. But it sounds as if you really do need to start drug treatment if the RA is having such a big negative effect on your life. If the drugs work for you, and they do for the majority of people, you could get back to going out with your friends and hairdressing. What's the thing that worries you most about taking them? Most of the side effects are quite rare, and only a very small number of people get them so chances are that you'll be fine. And after all, you can always stop again if they don't work for you. I would really think hard about giving them a go now! Polly.

[BoneyC]

I took MTX for 30 years and was absolutely fine on it. I started it when I was 18 after 11 years on A.C.T.H. steroids and other meds. My current doctors tell me I was the first to go on it in my area. However, I had to stop taking it about 18 months ago as it was making me neutropenic. If your body can tolerate it, you should be able to stay on it for a very long time. Good luck!

[2169]

I was on mtx for 10 years, hair did fall out, but nurse increased folic acid which helped, then 4 months ago had really bad reactions to it - constantly feeling sick, headache and always feeling like I'd got the flu, so have now come off it.

[tara0606]

i know i am scared of the side effects but im worried tht it might contain penicillin because ive been reading up on it and i think it has traces which im allergic to penicillin oh my head is soo confussed on what to do all i want to b is a normal 20 year old and do things that are normal but cnt but thanks anyway guys for helping

take care tara xxxx

[helixhelix in reply to tara0606]

Another of the drugs that are used for us, Sulphasalazine, is a bit like an antibiotic - so a bit like penicillin. But MTX is a completely different type of drug. I really, really think you should discuss this with your doctor as if the disease gets out of control you could get lots of damage. And worse than not even being able to do stuff with your friends would be to have to have big operations to replace your joints rather than just smaller ops to repair the cartilage.

[Josie2]

Hi Tara

I was put on mtx once i was diagnosed earlier this year and couldnt stay on it at all. Could even get away with the lowest dosage, it just wiped me of my feet for days after taking it. Im now on leflunomide and think im doing ok but did need to double my dosage straight away.

Hope you get sorted out soon but i know how youre feeling as its all new to me too.

Xxx

[Hidden]

Hi Tara0606

This is something we get asked about an awful lot on the helpline, many people are very nervous about starting any new medications, especially methotrexate. But as many others have mentioned, lots of people do tolerate the drug very well, and manage to get their RA under good control. It is one of the most highly regarded drugs in RA and is even used in children with juvenile forms of the disease. There can be adjustments made to the dosage of MTX, dosage of folic acid taken, or method of adminitration of the MTX that can help if you do have side effects from the drug. I thought it might be useful for you to read our article on MTX, written by one of our medical advisers: nras.org.uk/about_rheumatoi...

Unfortunately it is a bit of 'trial and error' with the RA medications so it can sometimes take time to find a drug that suits you well, and there is no way of knowing in advance which drug would be best for you. But the evidence does show that these disease modifying drugs are the best way to control RA and help prevent joint damage so it may be worth discussing things with your rheumatology team again.

If you would like to talk about things further you can always give the NRAS helpline a ring on 0800 298 7650.

Kind regards

Sarah Kate

NRAS

[megant]

Hi, I was diagnoses Jan/Feb and was put on MTX with folic acid. I was plodding along nicely and increasing by 2.5 each week, until I reached week 8 when I was on 20mg in total. I looked like death, really pale, I felt sooooo sick and tired all the time. My white blood count went very low to the extent where my immune system was so low they wanted to take me into hospital if I got any sort of infection, so eventually they took me off the MTX, I don't think it was making any difference anyway, I was still in a lot of pain and having to beg for a steriod injection every month to help me. Now, I'm on hydroxychlorine (or something like that, I can't spell it) with diclofenac, I'm not feeling anything like as ill before and it's been over 5 weeks now since my last steriod injection, so am hoping and praying that these drugs are starting to work now.

All the best for you though, like everybody says, different drugs suit different people. If your side effects get too bad please don't suffer, go and see your GP or ring a rheumy nurse.

Take care

Alison

x

[knobblyknees]

I was on mtx and at the time I didnt have a mirror in the house (I know - sounds weird) but when I went to a restrurant and used their loos, I saw huge round red blobs on my face. I asked a friend why hadnt they said anything but she said she thought that was normal - hadnt known her for that long, Blood tests were coming back normal. Anyway I ran out of mtx for a while and my blotches went away. After about 4 weeks I started taking it again and the same happened. so it was defo. the mtx