new diagnose's

i'v had the symtoms of RA for a couple of years now , saw a differant GP in the summer and refered me to the rheumatoid specilist where i was given a 95% diagnoses of RA , i was given Hydroxychoroquine which i stopped after 3 weeks it made me feel so ill , went back to see rheumy nurse in september and was put on methotrexate 15 mgs on a friday followed by 10 mg of folic acid on saturday , i seem to tolorate the methotrexate quite well bit of nausea , i not sure how long they take to work , i'm still waking up with very stiff hands and ankles and still painful every morning and now the weather has got colder my shoulders elbows and knees have started to hurt more ( i have frozen shoulders ), my mobility has become virtually impossible the pain in my left ankle and hip is excruciating , i'm waiting to be assessed for pip which i applied for 6 months ago and still no appointment , my council did give me a disabilty bus pass on sending a letter from my GP which i'm so grateful for has given me some sort of life back now .

just wish for a pain free day don't think thats going to happen .

i'm back to see rheumy nurse 19th december hope she can shed more light on why i still hurt so much and the stiffness

7 Replies

  • Sorry you are struggling Patrice. I think the idea is that you try MTX for about 12 weeks before they decide whether or not it is working for you. They might raise the dose next time if you are tolerating it well - or introduce Sulfasalazine with it perhaps. I know it took six months to work properly for me although it took the edge off the pain and flares after about three months. I really hope it starts to work and you feel better soon. Twitchy

  • thankyou twitchy

  • Hi patrice123,

    It can take a while to get the medication right for rheumatoid arthritis. Unfortunately it is one of those conditions for which there is no one right treatment. What works well for one person may not work for another. As Twitchytoes says, it can take up to 12 weeks to feel the full benefit of the drugs you are given. Hope the methotrexate works for you but there are certainly other options available for the rheumatology team to explore if it doesn't work well enough. Hope you feel better soon and good luck with the PIP.


    Beverley (NRAS Helpline)

  • Hiya patrice123. I'm sorry you're struggling at the moment. I had a clear diagnosis fortunately & started on hydroxychloroquine within 2 weeks of going to my GP with painful, stiff & swollen feet. HCQ worked for me though became less effective over a year when methotrexate was added. That didn't control me well enough to my Consultant's satisfaction so HCQ was withdrawn & now taken MTX for 5 years now. Unfortunately like many of our meds it takes time to work, some like MTX & HCQ anything up to 12 weeks we're told, & often don't come without side effects but if they're tolerable or something can be given to make them tolerable, they can do a very good job at controlling us.

    Your Rheumy nurse will be able to help you when you see her later this month but please do explain fully how you feel. It may be that you're MTX hasn't had long enough to reach full effect & that's why you're feeling as you do but the colder weather certainly doesn't help. Dampness & humidity are what makes me worse & I'm considered controlled on my mix of meds. She may even suggest a steroid injection or short course of oral steroids to get you through this rough patch between that you're having. I hope so. It might help you to look through the NRAS website to see how things are generally done & what you can expect from the meds we are prescribed.

    I also hope your PIP assessment comes through soon. I'm still waiting too as are others here so we're not alone!

  • it is my ankles that are worst and the base of my thumbs on both hands , trying to uncurl my right hand on waking is so painful , and getting the ankles moving is difficult most times .

    i phoned Atos friday asking what progess my application is making as its 6 months since i applied , the reply i'll make sure your still in the system , " ah yes you are " they are behind you should recieve your appointment soon , if you have any further medical evidence send it to dwp , i replied i'll bring it with me don't want it being lost

  • Have you been to see physio, i went to occupation therapy and she gave me a night splint, and day splints too, i cant get on with the night one but i keep trying it, for the night one you have to have it fitted and it will only fit you hands

  • waiting for occupational health to come out and see me , as i can't stand for long like to peel vegs and such like , i need a walking stick but the pain in my wrist and hands stop me fom using one so hoping occuy health can help with that

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