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Newly Diagnosed

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sally87580
sally87580

Hello it would be really good to hear some advice and talk to people who understand how it feels. I have recently been diagnosed with RA. I am on hydroxychlorquine but been recommended to be on Methotrexate. I have pain in my feet everyday with the mornings being the worse. I have the occasional flare up in knuckles and shoulder but since being on medication these have not happened as much or lasted as long. It really gets me down and I don't know what to do for the best. I have 2 children and scared to do too much as I know I will prob pay for it the next day.very scared for the future. I haven't told many people,no one at work knows. I don't want to be treated differently.

1 like, 8 replies

8 Replies

  • syedq51
    syedq51 sally87580

    Posted

    Hi if your joint pain increase u will have to take mthtrxte as prescribed followed by folic acid 5 mg for 3 days. In the beginning u will need lab tests to see if these meds are not affecting ur lever and kidneys. If every thing is fine repeat the tests every six months. Controlled diet and regular exercise will have an added advantage. Good luck wishing u a speedy recovery
  • lyn1951
    lyn1951 sally87580

    Posted

    I have been trying a wheat free diet, tough to cut it out completly, but well worth the effort for me, my arthirits has completly settled down, don;t belive it sometimes, but I find out pretty quickly if I eat something if wheat in it Ouchhh.  Oh by the by am not celeic, have been tested.

    You will find that controlling the RA is an exercise in playing musical drugs, your body seems to get used to something, and you end up changing to something different that works well for a while MTX has been a life saver for me, and kept my arthirits under some level of control with very little side effects.

    • tc3120
      tc3120 lyn1951

      Posted

      Hi lyn1951,

      I was just diagnosed at 43 and have two small children. They said it's very early as I have no inflammation or joint damage at all at this point. I had one brief period that both my feet and wrist hurt---which led me to the rheumatologist! It mostly went away and now I just have minimal wrist pain. I just got diagnosed a week ago and I take my second dose of MTX tomorrow of 7.5mg...fingers crossed.. So far so good. I just wish I could have a drink! LOL

  • martin31040
    martin31040 sally87580

    Posted

    Hi I know exactly what pain your feeling, I was diagnosed about 16 years ago, after being on sulfasalazine Since then, they tried me on methotrexate but could not tolerate it, but last few months been on Benepali a sort of miracle medications for me, symptoms 90 % better, it's hard to say what you can do to help yourself I've tried all sorts its best to walk keep active easier said than done I know, Benepali is a biological drug, biological drugs seem to give people the best results against RA unfortunately you have to try other things first, good luck on what ever medication you get.

  • tc3120
    tc3120 sally87580

    Posted

    Hi Sally87580,

    I'm 43 and was just diagnosed as well. I know exactly how you are feeling. I have a 5 year old and a 7 year old and run a small business. I just started on methotrexate as well. 

    Where are you located? I have had one "flare up" which basically led me to the dr. It's n the early phase they tell me. That still does not make me feel better! I know with early treatment the prognosis is good, but still the diagnosis  just sucks!! 

    I also have not told many people either. I'm also trying to stay off the internet! LOL --However I'm siting here typing this...LOl

    Please keep in touch with me and let me know how you are doing.

    TC

    • sally87580
      sally87580 tc3120

      Posted

      Hello,

      Thank you for your message.

      I had a steroid injection Tuesday which seems to be slowly helping.

      I think I am going to have to go on Methotrexate but really worried about the side effects.

      Hope you are keeping well

    • blair97497
      blair97497 sally87580

      Posted

      Hi Sally. I read your post a few days ago but like tc3120 I am a bit hesitant about these discussions. First methotrexate - I have been on it for 9 months, no side-effects. A few months ago I switched from tablets to self administered subcutaneous injections, which improved the effectiveness for me.

      Am also on Hydroxychloroquine. Tried sulfasalazine but stopped it after a month or so due to nausea and a rash. 

      There is a lot to learn, I found, and some really unfortunate cases here and there especially on these boards. I expect these discussions attract those having difficulty, while greater numbers are out in the world quite well treated and getting on with life. I have 2 work colleagues who I discovered have RA and psoriatic arthritis, and they’re both successfully treated and living well. I only heard they had it when I suddenly got RA a year ago.

      I don’t know how you’ve been. My onset was widespread and bad. Very debilitating. And at the time, depressing, as it was hard to believe that things would not stay bad or get worse. I have never had a lot of swelling but more pain and fatigue. Treatment has been quite successful fo me, though I still have bouts of fatigue, and am aware of many joints in my fingers, hands, wrists and feet. They can make me more cautious sometimes, but generally I still do what did before. I take it easier, but I am not creeping around being hurt by using light switches, flushing the toilet, brushing my feet on the sheets, lifting a spoon. THAT was the scary time. 

      If things get bad occassionally now, it is mostly tiredness. 

      Strangely, picking up exercise raises my energy. Just something gentle like aquajogging is mostly what I favour. No impacts. 

      I’m sorry you don’t feel able to be open about your situation at work. Of course everyone’s situation is different. My employer has been very understanding, for which I am really grateful.

      While there are no cures, the treatments are now well established, with good data to support them. Try to trust your specialist’s advice over strangers with no real insight into what is happening in your body. Read from reputable sources. 

      Best wishes, I hope things improve for you soon.

    • tc3120
      tc3120 blair97497

      Posted

      Hello Blair,

      Can I just tell you , I was so glad to read you previous post! As I had mentioned, it seems many online boards post the most extreme bad situations. 

      I'm slowly getting my head around this and fortunately at this time, I have minimal pain, just a very early diagnosis.

      I just started the methotrexate last week and we will see how it goes!

      I'm glad to hear you are doing well. What part of the country do you live in?

      TC

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