Newly diagnosed

Hi I have been diagnosed a couple of months and have started treatment, I am on methotrexate which has made me sick so have had to have a break also on hydroxyquinnie and am about to start a 3rd drug. I am still stiff and tired but I think I have gone into denial work are difficult about time off and make me feel I'm milking the situation (strange considering I'm a nurse ) and instead of cutting back hours I have a applied for a job with more hours and more stress. I am worried what life is going to be like and whats going to happen to my joints and how fast things will progress . I feel so uncertain about things so am constantly scared . Is this normal

8 Replies

  • Hi and welcome to this site.

    I too am fairly recently diagnosed.......just under 6 months now. I think I too am still in denial really. Such a horrible, scary diagnosis to get.

    Do you work for the Nhs? I do, and they have been great with me so far. I had 3 months off sick when it first started, have had a phased return to work and am now using last years hols to shorten working week. I have also had discussions about what I can and cannot do at the moment and if I need to take more time off because of ra then I cannot receive the usual warnings after time off sick. Ra comes under disability laws and so work have to try and be reasonable about what you need.

    I am on mtx and leflunomide, I hate taking them as I think we all do, but I am grateful that we have these drugs now that can help prevent joint damage. Many years ago I worked in a rheumatology hospital for a while....the image of that was what I still had when I got my diagnosis......well fortunately it's not like that nowadays, your rheumy team will work with you to get things under control quickly to prevent joint damage and let you lead a near normal life.

    Everyone on here is great and there is loads of experience here, so if you don't get all the answers you need from your rheumy team, someone here will probably be able to offer some support.

    Good luck xx

  • Thank for the reply I do work for thr nhs and have been told I could get a verbal warning if I keep having time off sick backed by hr. I also have to bring all letters and appointment cards to prove mt

    Y appointments . I wouldn't mind but I have never been a slacker and before my diagnosis I dragged myself to work even though I could barely walk. Thanks for the reassurance I'm sure the drugs will work soon

  • Hi again

    Have you been to see occupational health yet? If not ask to be referred. They will write to your manager suggesting what you might need to help you and also pointing out that Ra is covered by the equality case your managers haven't realised!

    I was sick too with mtx the first few weeks, just upped my Folic acid and seem to be ok with it now. Think I may need another Dmard though as still got niggles, but am much better than I was.

    I was also very anaemic for a while which didn't help things.....again much better now since got iron from docs. although its great to have these drugs, they all take ages to work if they are going to, and they all have some side effects.xx

  • Hiya & welcome. I am also relatively new to this site & although not recently diagnosed have found it to be very helpful & the members supportive. You'll get varying views but that's how the best forums work. It's a shame that you're not able to tolerate MTX as it can also be used in combination with other DMARDS often to good effect. Not everyone gets on with it but did they offer you the option to inject? Also folic acid can help with side effects. Mine have been lots better since injecting. Still a couple of off days post injection but nothing I can't cope with. It can take some while & switching about of meds before you will find you'll feel somewhat human again. What suits one person doesn't necessarily suit another. One thing I would suggest that you can do for yourself is rest when your body tells you to. You'll get to know the signs. Maybe not such a good idea to be applying for jobs with more hours & extra stress. We all know how hard you nurses work! Keep with cutting back your hours if you possibly can as stress can also set you back.

    One thing to take consolation from is we've all been exactly where you are at the moment to a greater or lesser degree & a visit here can help & sometimes to put things into perspective. It does with me particularly reading about those amongst us with numerous other conditions to cope with too. I feel so fortunate at times only having RA sometimes. It's frightening when first diagnosed, I think it's more fear of the unknown, but it'll get better once your meds are sorted & you start feeling the benefit. There's also the NRAS helpline team - or 0800 298 7650 & when if you have a sec. take a look at you'll find loads of information there.

    Hope you get on the right track soon & happy posting!!

  • Thank you

  • I too was a nurse, love your tag name , is it from Mel Brooke's? Anyway immediately phone occy health and tell them yourself of your diagnosis. Then Ask to be referred, i self referred. It's covered in the whatever the disability act is called now and my manager then changed completely and couldn't do enough for me. I got less hours and equipment like trollies and new desk station to help me in a government scheme called access to work. Also later Personnel will get involved if you have time off, these will be disability not sick days. With the experience I have now I personally wouldn't take on more hours etc!!

  • Welcome! Can't add to the good advice given, just to emphasise that we're all scared when first diagnosed, but it will get better! It's important that you know that you're not alone, this forum is very supportive, and if you have questions someone usually has an answer or a suggestion! NRAS is another place to go for advice and information.

    Hope the work situation gets sorted soon. M x

  • Thanks for all the advice. Good to know I'm not alone

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