Hi Everybody !!

Hi - I was diagnosed with RA 3 years ago, I have it in my back, ankles but the worst is in my right hand which I can hardly use. I have to type with my left hand so it takes me a while to get a message on. I am so glad to have found this site and share my problems with people who are going through the same.

After a couple of months of it not being too bad, since this cold weather has hit us I have been in agony, especially with my hand.

Iam under the specialist at the hospital who wanted to put me on Methatrexate but I have heard some horrendous things about it from people who have taken it and declined it, but I am in so much pain at the moment wondering if I made the right decision. Can anybody tell me of something that doesn't seem as drastic as Methatrexate.

19 Replies

oldestnewest
  • Hi Pip

    This is a lovely friendly site and i was really happy and thankful to find it. Im relatively new to it all as i was only diagnosed in April.

    I tried the methotrexate first but it wasnt for me and had to come off it, too many bad side effects. On leflunomide now with no side effects but think i need something else alongside as still suffering.

    Did your rheumy nurse not give you an alternative to mtx? Dont suffer in silence as there will be something out there which will help.

    Take care and hope you get sorted soon.

    Xxxxx

    Jo

  • HI like you I type with a pencil find it better to hold and press not so painfull ive been on mtx for 6 mths now and was doing well but had a knee replacment that triggered a flare which means increase in mtx but I think it has kicked in slowly as I do not have the fatigue but still have painfull hands but slowly getting better as for side effects feel grotty sat take tabs fri i just rest and have easy day pizza for tea i do have a sickie feel but never been sick i do think it is working but it takes time

    lizz

  • methotrexate sounds scary, but for me it's been a wonder drug. I got over the side effects quite quickly, and have not had too much problem with it since. And I'm virtually pain free, with fingers and toes that bend, and knees that I can walk with so a complete change from before I started on it. But there are quite a few options, so do talk again to your rheumy team as you are risking permanent life long damage by not trying the drugs. Other common drugs that are not as scary as MTX are Hydroxychloroquine and Sulphasalazine. I also take these, and they've been fine for me. This is such an individual disease that you really do have to try things our yourself, and see what suits you and has a positive effect in controlling your RA. You can always stop taking them..... Polly

  • hi pip

    Don't be worried about Mtx it is a very good drug and very popular,, everybody understands on here how scary this drug can be at the start an we all know just how your feeling ,, we were all the same .. like .!!! . what the hell is this drug .?? . OMG .. so try not to worry .. youve also got the support and help / advice from 100s of MTX junkies on here .. so your in good hands ,, you`ll be regularly monitored with blood tests to make sure you're ok .. most important of all though ,, is the drug does work n work well ,, so you will feel alot better .. very soon ..

    good luck

    andy

    p.s .. you `ll be fine ...

  • HI Pip, i was on metx when first diagnosed - nearly 2 years ago. I was taken off it because of side effects but I would like to go back on it again. It was a great help and certainly eased the effects of ra. I wouldn't worry too much as everyone else has said, you are monitored at first weekly so it the drug isn't agreeing with you, you are taken off it. Good luck,

  • hi Pip, I've been on MTX for over ten years and my mum has been on it for over twenty years, other than feeling sick after taking them(Folic acid helps with that) I think it's the best thing ever! like you the pain was horrendous but within three months of starting this drug I was so much better and now am in no pain at all, don't even take pain killers and am managing to work full time , looking after children, which means I am on my feet, lifting them, pushing double buggies etc......none of which I could have done without MTX. give it a go, don't think you will regret it.

    Bev x

  • Hi Pip - MTX has been a complete wonder drug for me same as everyone here says. Try it and keep and open mind. We are very well monitored on this drug for safety and if you do take it you might find it completely life changing as many here have said including me! Tilda x

  • Hi, I have been on MTX since the 30th Oct and still waiting for it to kick in completely. I to heard the horror stories but I was prepared to give it a go to be pain free. My left hand and both feet are the worse for me and I do feel this cold weather has something to do with them getting more painful. I also take 15mg of pred as I also have PMR along withthe RA and I am diabetic so lots of meds daily. The only problem I am having with MTX is my hair thinning and I pray it does not go to thin as my hair is my best asset lol.

    Do try it, if you get side effects then you come off it butplease don't suffer with this dreadful pain.

    Sue

  • Hi Pip12...........I was exactly like you - I scoured the internet and saw all the horrific side effects that COULD be associated with Methotrexate - I refused to take it for years until I was in so much pain in my wrists I would have gladly have had them cut off. So I gave in and took the Rheumatologist's advice and started off with 4 tablets a week, slowly increasing to 8 tablets & after three months I realised that I had put up with so much pain by reading all the info on the internet that MIGHT - not WOULD happen.

    I have now been on it for about 4 years with ernormous success. I get the odd feeling of nausea - but can't really pinpoint that Mtx is the culprit. It has recently been proved that it REALLY works as I had to come off it because of other health problems, and all my RA symptoms came back within 3 weeks. I am now taking 3 tablets twice a week, and will go back to my 8 tablets once a week gradually. I had a Depomedrin (steroid) injection to calm down my symptoms and now a month down the line I am almost painfree.

    I read on this site how some people can't take Mtx - but you might be one of the lucky ones like me.The only downside as far as I am concerned is having to have blood tests - at first every 2 weeks,but once you are settled on your dosage it's only once every 8 weeks. So if your Rheumatologist thinks you would benefit from Mtx plese do give it a try - just think you might be painfree in 2013!!!

  • Thanks for all the replies, this is certainly a brilliant site and everybody seems so friendly. I am going to go back and see the specialist and have a good talk to her and see what she suggests.

    I have been reading all the posts on here and its comforting to know that other people understand what you are suffering. Sometimes I think some people don't understand, its not just the horrendous pain of it, its the fatigue and the depression you feel that gets you down.

    Thanks everybody, it has cheered me up finding this site - xxx

  • Aw its good to see this site has cheered you up and given you information you needed and its good news your going back to see your rheumy.

    Let us know how you get on & take care.

    Jo

    Xxxxx

  • hi i know how u feel about methatrexate even the word sounds horrid. i can say other people i have seen on it do seem to keep well on it all the swelling of the joints seem to go down. i can't take it coz i had a liver problem (hep b ) so i take sulphasalazine i have been on it for just 12 wks. as tilda said to a comment i left on this site things do get better.i am so pleased to say i am being to feel like me again long my it last.so hugs to u and let ur rhumy put u on something xxx

  • Hi I haven't started MTX yet, Due to my liver function test, But have a appointment tomorrow to see if there has been any change ,But i was like you after ready about all the side affects, But it was the lovely people on here, and all the positive results i have heard has made me change my mind, At the end of the day, i think we all have to give it a go, and also give it time to work.

    Take care xx

  • People can do very well on methotrexate and some people have virtually no side effects too, different drugs suit different people however and patients still have the right to make informed choices x

  • Just another bit of advice - if you have been putting it off for three years then I wouldn't wait long to start because all these DMARDs take a while to work - it took me 3-6 months plus an additional DMARD to get my RA well controlled. My consultant told me that on the whole MTX is well tolerated so try to keep your mind wide open if you can.

    I was terrified when I started but suffered no side effects bar my liver function tests and the odd spot. I reached 17.5 mg before I started to feel sick so have now switched to mtx injections. I'm really not into taking drugs at all but now that almost all pain has gone I would say that the prospect of deformed joints and a lot of pain when I'm older keeps me focused this as a wonder drug. Tilda x

  • I'm another methotrexate taker who has done well with it. I read all the info, and wondered what would happen, what the side effects might be etc, but for me these have been almost non-existent and the improvement was huge. I've gradually risen to 20mg per week, and apart from generalised aching and stiffness, my joints are trouble free - certainly none of the agonising, immobilising pain that I did have. I can now ride my horse, when I did have days when I couldn't walk across the room.

    Long-term it's also important to protect your joints from damage, so do go back to your rheumy team and discuss your concenrs with them, and get some kind of treatment. If mtx doesn't work for you, there are other things you can try, but it seems to be the standard one they use first, probably because it does work for so many people.

    Good luck.

    Dotty x

  • I have been on methotrexate for nearly 4 years now and the only side affect is a a bit of nausea for 24 hours after taking it. Did have a few issues when increasing the dose to 25mg but these went when I lowered the dose to 20. Worked well for me for 3 years with the addition of Paquinal after 2 years. The difference is fantastic and to be able to play golf again was brill. Now taking Humeria and Methotraxate as efficacy stated to fade for me after 3 years and to be pain free again is fantastic. Really don't want to go back to pain in every joint, needing help to get dressed and help to pick up a knife and fork.

  • Hi Pip

    As you can see, MTX is a drug that is commonly prescribed and that a lot of people do very well on. It might also be worth knowing that it is the only drug that is specifically named in the NICE guidelines as a drug that you HAVE to have tried before you are eligible to start on any of the newer, biologic drugs, which you may need at some stage. Therefore, although there would be other options, you may need to go onto this drug at some stage anyway. It is worth discussing the concerns you have about the drug with your rheumatology team, as sometimes the things that you might read online are not put in context, and it may not be as scary as you are imagining. If you do decide to go onto MTX you will be monitored regularly for some side effects, and as others have said, they are only ever 'potential' side effects.

    If you ever want to talk this through with our helpline please feel free to call us on 0800 298 7650 (Mon-Fri 9.30-4.30).

    Kind regards

    Victoria

    (NRAS Helpline)

  • Once again many thanks for all your help and suggestions, I will leave it to the New Year now but will be in touch with the hospital again in the New Year.

    I am so glad to have come on this web site and never imagined there would be so much help and support, wish I had found it a long time ago. Pip12 xxx

You may also like...