Feeling really fed up

After 3 cancellations finally got my rheumy appointment , was hoping to see my consultant but she was not in clinic . I've had the worst flare up ever been 6 months of constant pains stiffness fatigue , in hands knees hips shoulder and neck and spine . I'm seron neg and been on mtx sulphalzine plaqueril plus many others , but still no better slowly getting less & less mobile . Well today they've taken me off mtx and increased sulfalazine and starting me on a drug called LEFLUNOMIDE have any of you had this med and had good results , I'm feeling like no one understands what it's like for myself and my poor hubby who's been brilliant . Hoping to get some relief very soon x

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  • Good that's an improvement! Leflunomide otherwise called ArAva is another dmard. It really keeps my swelling down therefore reduces pain. Keep on it and if no better in say three months I would tell them.

    You can look Arava up on the main NRAS website under disease modifying drugs.

    I know how your husband feels, mine was the same. A lost puppy and so worried. We went to a support group might and one of the couples there helped him a lot. I'm sure the NRAS helpline would talk to him too if he's the type.

  • Felicity, a warm hug coming to you from me. I know how you feel when you don't seem to be getting any better. Tell your hubby he is not alone,if he wanted he could speak to my hubby. I can message you with our number if you wish. xxxxx

  • I'm taking Leflunomide felicity. I was given 10mg tablet every day to supplement methotrexate. I've had to stop metho now, so I'm just taking the 10mg Leflunomide and I'm not too bad most of the time. So I think it's a pretty good treatment. Kath xx

  • I was on lefl. For a while, no side effects at all, had to stop it as not controlled, so went onto biologics. Hope it works fine for you :)

  • Aww thanks guys you are all so lovely , reading your replys has made me feel more positive and certainly not alone anymore , we'll be taking it tomorrow chemist didn't have it in stock so on order . I'm also hoping my blood work will be better been having enlarged red cells possibly the mtx so only time will tell . A thank you to you all and sending healing hugs (gentle ones ) lol to you lovely people obviously the best advice comes from others who are going through it . X x

  • Hello

    It may be an idea to see the GP and ask to be referred to a PAIN CLINIC, they will help you control your pain, they will show you how to relax and train you in the use of a TENS, also how to reduce being tired.

    There is also a further course on RA, they train in physio like Pain Clinic how to express the pain in terms that they can understand

    Both courses are both useful and I attended both many years ago. If you were to choose the Pain clinic is the best

    Good Luck

    BOB .

  • Thanks bob , I will see my gp next week and ask if there's one in my area would be a good idea . And no sleep is such a big issue with me , hope you are ok how's things ?

  • Hello Felicity

    I am fine just being having a pre op check today and blood tests tomorrow, will be glad when all over

    Look after yourself

    BOB

  • What op you having hope it all goes well

  • Hello felicity

    I have arthritis in the jaw and they cannot do dentistry as I am unable too open my mouth properly.

    So they save up all fillings and extractions and do them all together got 1 tooth a wisdom tooth extraction and 6 fillings and alterations to front teeth fillings. It basically all renewals, I will be under for about two hours.

    Best sleep in Northumberland

    Thanks for asking

    BOB

  • Ouch poor you , I've not heard of RA AFFECTING the jaw sounds really painfull , hope your op goes well let us know how things went when your upto it .

  • Hello

    It is ok have gone through all of this now for about thirty years, treatment periods once every two years.

    problems arise if you have a bad tooth, have now been waiting this time for nine months, the dentists cannot touch me so just have to wait. Should get my teeth done in next four weeks.

    Mind it is the best sleep in the NHS.

    THANK YOU

    BOB

  • Good luck Bob xxxxx

  • you're not on your own , fairly new to this myself , just in mtx at the mo. so far no response. also sero-neg. can't offer any advice but just to say I understand and my other half is great but it must be awful , don't feel like me at the moment and the not sleeping and fatigue is horrible. hope you get some relief x

  • Julie I can relate to all of that , I've had about 2 hrs sleep last night just couldn't get comfortable , I keep thinking because I'm seron neg it's a wrong diagnosis but the scans & X-rays confirm RA , But even my crp esr levels are normal even though I've got visual swelling and inflamation & pain . Hope your not suffering to bad I'm still quite new to all this been about 15 months and my meds haven't done anything I've got a lot worse . So hopefully new meds will be of help . How long have you been on mtx stick with it I'm told it can rake time to work .

  • hi felicity. been taking mtx 12 weeks and just increased the dosage. I know it's early days but it's horrible waiting to see if anything improves , it's the uncertainty isn't it ? I believe that a lot of people are sero neg. and still like us have a diagnosis of RA. been awake since 2.30am uncomfortable and wide awake but I'm on pred. and I believe that messes up your sleep , it's like my head won't switch off ! taking to the sofa this afternoon ! take care x

  • Lol I've just woken from a nap on the sofa how uncanny is that . Hope mtx is a success for you but many of us have to try different meds to find the one that suits them I'm on my 3rd change plus had steroid dep medrone injections that worked really well at first .you take care to x

  • thanks again..I'll let you know how I get on. fingers crossed. hope you feel a bit better soon x

  • I am sero negative too but inflammation hurts whatever they call it!

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