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Rheumatoid Arthritis. New to this forum

Posted , 9 users are following.

WendYs53
WendYs53

Hi  I was diagnosed with ? RA in November 2014 on my first visit to see Rheumatologist. Following lots more tests, this is now confirmed. I started with symptoms mainly hands fingers wrists. A few days before I saw consultant I had pain in ever joint. Any movement was painful. I was put on 15 mgs  of steroids, which helped enormously. The side effects were nearly as bad as the RA. The dose was reduced to 10mgs, which has improved the side effects. In the last month I had 2 flare ups, first hands wrists elbows and shoulders. Second flare was every joint again which lasted a week. I see Rheumatologist next week and wonder what might happen now. I have other health problems. What questions should I be asking please. I am making a list to help me. Any help would be greatly appreciated. Thank you.

0 likes, 23 replies

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  • Jan999
    Jan999 WendYs53

    Posted

    Hello. I can't help you because my first appointment with the rheumatologist is in a weeks time but I hope I can gain something from the replies as I'm quite anxious particularly about the side effects of the different drugs. I also don't quite understand about the flares because I seem to be in constant pain particularly in my shoulder.
    • Jan999
      Jan999 WendYs53

      Posted

      Hi Wendy does your pain go away completely on steroids?
    • WendYs53
      WendYs53 Jan999

      Posted

      Hi Matron

      my pain does not go completely but is so much better, plus the swelling and stiffness are so much better in my fingers

  • VictoriaM84
    VictoriaM84 WendYs53

    Posted

    Hi Wendy,

    When I was first diagnosed I was given kenalog which is a steroid shot, I was pain free for around 3 weeks following the shot and I had no side effects - I suffer with RA in all of my joints so I would highly recommend kenalog if this is offered to you.  I had another shot in December when I was in a lot of pain.  I have now been on Sulfasalazine for over a year, which includes weekly/monthly blood checks.  I do worry that this has stopped working for me as I have been suffering with flare ups recently however, I am hoping this is only down to the cold weather.  I'm sure each individual case will be different though you will be offered medication to suit your needs.  Ask any questions regarding the risks with taking medication. e.g. my rheumatologist is reluctant to give me methotrexate because I am 30 and would like to start a family in the near future; methotrexate has to be stopped 6 months before trying for a baby and in some cases can cause infirtility (Sulfasalazine has these effects on men). Try not to worry as you have your appointment next week so your pain will hopefully ease with medication.

    Take care xx

    • Jan999
      Jan999 VictoriaM84

      Posted

      Thank you Victoria. It's good to know there's a drug suitable for young women who may want to have a baby. I read Sulfasalazine was ok. I'm 61 though so no chance for me! Have read about Methotrexate as well, the side effects have put me off. Having said that when it comes down to it I'll try anything to get rid of the pain.
    • VictoriaM84
      VictoriaM84 Jan999

      Posted

      Yeah I'm with you there, if it comes to the crunch I'll absolutely take methotrexate regardless of the effects as I don't want to go back to how I was before the diagnosis.  I wish you the best of luck with your appointment and medication xx
    • danny16391
      danny16391 Jan999

      Posted

      Hi Matron,the consultant/doctor will probably start you off on the cheapest drug possible.If you live in the uk you will get a yellow card,that will be marked up every time you have a full blood count taken.
    • Jan999
      Jan999 danny16391

      Posted

      Thanks danny. I wonder which is the cheapest drug? Will have to do my research.
    • frances85589
      frances85589 VictoriaM84

      Posted

      I have tried various drugs...methotrexate.improved a lot until consultant raised dose then irritating my liver and bladder so had to come off it.it did thin my hair too.I am on predisalone steroids and sulfasalzine.they tried me on biological ones embrel +humira where its self own injection. Then rituximab ..its dripped into you through candula.nothing helping n was going to start another one but since December have been tripping up n speech not right.from Friday my right leg giving way and my body jerking.had ct but can't see anything so waiting for urgent MRI + see neurologist. I said I would try anything but now I am worse do read up on stuff.maybe I have been unlucky
    • VictoriaM84
      VictoriaM84 frances85589

      Posted

      Thanks for that Frances, I will look into it more as I would prefer not to go onto Methotrexate at this age to be honest.  I've never heard of those other medications so I will be sure to bring it up :-)
    • Jan999
      Jan999 VictoriaM84

      Posted

      That's the great thing about this forum. You get more information here than some of the doctors.
    • VictoriaM84
      VictoriaM84 Jan999

      Posted

      I'm so pleased I joined, I wish I knew this existed in 2013, hearing you're not the only one makes things a little easier. Thank you smile
    • danny16391
      danny16391 frances85589

      Posted

      Francis your next drug will probably be toccilmub if they tell you that you have to take methotrexate with it,tell them you want it on its own.

       

    • frances85589
      frances85589 danny16391

      Posted

      Before this last health concern they said I was going on toccilmub and I said I couldn't as I have diverticulitis so could make stomach bleed etc.was supposed to then go on abatacept but with recent tripping and jerking and speech problems it has been cancelled and I have to remain on other drugs am on til MRI and neurologist sort me out Danny
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