Hello

Hello

Hi,

I was only diagnosed with RA in December 2012 & so I'm very new to all of this! Started on Methotrexate & folic acid four weeks ago along with the painkillers & anti inflammatories that I was already on. Feeling sick, sore, tired & generally miserable most of the time...please tell me it gets better!! Think I need somebody with a positive outlook that's further down the line to give me a boost & hopefully in time I will be able to do the same for someone else in the months/years to come. Heather

17 Replies

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  • Hello Heather

    Im not the best person to reply as a year and a half later im still not sorted with my meds lol!

    There are, however, people here who will be able to give you a more positive outlook on ra.

    Just keep plodding on and take care.

    Jo

    Xxxx

  • Hi Heather

    I was diagnosed in January 2012 after being in great pain and unable to stand up from a chair. I now take mtx and can honestly say that the transformation has been amazing. I am now about to go on my 2nd skiing trip this season! It does take a while to get to this stage, hopefully it will work for you too.

  • Hi Heather and welcome. I was diagnosed and put on Methotrexate (MTX) a year earlier than you and am now doing really well. Sure I did have to add in a second DMARD, Hydoxichloraquine in April because I couldn't tolerate a higher dose of MTX - and also switched to injectable MTX in September so that I could tolerate it better.

    Now almost pain free most of the time and feel generally very well although had to have my folic increased to four tablets a week when nausea became an issue with injectable MTX, but check with your consultant or nurse before increasing the dose because it can compromise the effectiveness of the MTX.

    It's all been a huge journey and a lot of adjusting and fine tuning of my meds via my GP who emails my consultant when he's concerned. But I'm really getting there now with 70% disease control and hoping that a rise in dose of MTX last week will further decrease the remaining 30% of active disease.

    Hang in there and recommend you keep as active as possible too - my daily exercise routine (started small and gentle and have now built up to more rigorous stuff) has definitely helped keep the RA strictly at bay. I'm also gluten and caffeine free and try and avoid refined sugar too so pretty healthy and, apart from certain qualms about whether I even need these drugs anymore, I'm really well and living life to the full. This is the best place to come to have your hand held sometimes and receive support and advice. Tilda x

  • Hi Heather, I was diagnosed in May 2012 and at that time I was in awful pain and like you felt as miserable as hell. Did your rheumy give you a steroid injection to help with pain and inflammation while the mtx gets into your system? I had a steroid injection twice in the first 3 months which really helped until the mtx took effect. By July 2012 I felt much better and now I hardly ever need to take anti inflammatories or pain killers. I do most things I did before and have joined a gym. I work out, walk or swim most days now and feel happy and healthy. Those early days are an awful distant memory now and yours will be too. Keep positive, eat healthy natural foods and listen to your body. Good luck to you and hope you feel better soon

    Paula x

  • Hang in there, it does get better, but it takes longer than you want to believe. We are the antibiotic generation: take these pills and feel better in 48 hours. It's hard to get your head round the idea that drugs can take months to work. The early stages are hard work, when you just feel crap all the time. Be as kind to yourself as you can, and look after yourself well.

    I'm back on horseback, if that helps.

    Good luck.

    Dotty xx

  • Rosemay, am nearly 11yrs in with ra. At the moment i am in a flare and it is very hard,but i try to stay optomistic and i say bugger to ra. Humour has been a big help in keeping me going. When they get the meds right you should be able to get on with your life fairly normally. Be patient if it doesn't go fast enough for you, it will come.xxxx

  • Yes it does get better for the vast majority of people....hang on in there! My magic week was week nine, and I still remember it several years later. From hardly being able to get out of bed, and chomping painkillers by the bucket load, and feeling sick and headachy from the MTX it all started to change then, and suddenly joints started bending and the pain started to ease. I was on the point of despair, as it seemed to get worse after I started all the pills, so any improvement was so exciting I could hardly believe it. Took quite a while longer to really get back together again, but all in all MTX has been wonderful. And now I'm 95% normal most of the time and can generally do what I want when I want. But as Dotty says, it is just so slow! Try not to push it all too hard too quickly, and get enough rest, but stay positive as it WILL happen... Polly

  • Thanks everyone for all comments...positive or negative lol! It's great just knowing I'm not alone & looks like I'll get all the help & advice I might need from lots of friendly people :) sorry I can't reply individually but keep getting an error message when I click on "reply to this" link! Hopefully be able to post some positive news in a few weeks. Take care all & thanks again, Heather x

  • You may need to sign in first? I also recommend you join NRAS if you haven't already done so. This is the most brilliant charity. Tilda x

  • Thanks Tilda, think its a problem with my computer, it's working on my phone! Signed up for NRAS too & slowly working through all the information..one benefit of not being able to do much else at the minute ?? Heather x

  • MTX can transform many people lives and lots of people do very well on it x

  • Hopefully I'll be one of the lucky ones x

  • Hiya welcome to this wonder site, as you know now you are not alone and we are all here to help you with our experiences and advice as much as we can, I was Diagnosed in July by my GP,but it was only confirmed by a rheumatologist in November, by then i was really down until i joined this site, I have now been on MTX now for 6 weeks and i have also had 3 steroid injections over the past 3 months, I have really noticed the difference, and my blood results are getting better and better every week, I haven't been able to return to work just yet, but it is early days,

    remember everyone is different, i haven't had any really bad side affects nether compared to other friends on here, So stay positive and take care xxx

  • It does get better. When at my most miserable I met several sufferers I had actually known for years without even knowing they had RA. They gave lots of support and tips ("get the drugs right and carry on with life", don't try to do three major things in a day", "work when you can, rest when you need to"). This forum will help!

    Love the pic - you another rider?

  • i was diagnosed in nov 2011 after a long time trying to get my meds sorted, im now on 6 mtx weekly and folic acid along with etodolac daily, i have only been on the mtx since the 8 th jan this year, i have only had mouth ulcers as a side effect and hopefully thats all i get , hope you dont get any and they work for you, they tend to start working about 6 -12 weeks of taking them. if you need to vent your mind from the cloudy haze of RA we are all here for you. x

    peace x

  • hi and so glad you are on the site. I has been the best thing for me since i got this ra in March 2011. I found the nras helpline really really helpful especially when i first got on the meds. So keep blogging and hang on in there. your meds take a few weeks to work and if they are not working well enough they will try others, so its really good you know what is wrong and can now go forward. love Ax

  • Hi I was diagnosed October 2011 and was put onto methotrexate, folic acid and low dose pain killers. It's now 16 months on and I have to say apart from the fatigue which never seems to go you would not know I have RA, I no longer take any pain killers and just have

    15 mgs of methotrexate so there is life after the diagnosis. I must admit I seem to be one of the lucky ones early diagnosis and the medications worked for me, so yes there is light at the end of the tunnel

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