20 years of RA frustrations?

I just want to say Thank you for this site and all of you amazing people. I read the posts often and this is my first post. I am a 54 year old female from Alberta Canada.

I was diagnosed with RA in July of this year with a CCP over 1000. Not sure what that means exactly. I just know that I was put on 2 Plaquenil a day right away by my GP and then I was scheduled for a Rheumy appt 3 weeks later, where he put me on 20 mg Prednisone and Methotrexate injections weekly along with the folic acid daily except for Meth date. My Rheumy told me to wean myself off of the Prednisone before my next appt with him on Sept 9th, which I have done. I am now on day 3 without any Prednisone, I have a wicked headache, my joints are all very sore, I didnt realize how the prednisone was blocking all of my pain. Today, I woke up with red itchy spots on my elbow, is this another side effect of weaning off of the prednisone?

I am concerned as 4 years ago I woke up with hives like these on my elbow and it was diagnosed as "Urticaria" which lasted for a year and a half. I am just praying that this is not the same diagnosis and is the side effects of weaning off of the prednisone. Or has anyone else had hives for extended period of time, is this another side effect of RA? I was diagnosed with Lupus as I had 12 years of positive ANA tests and then the 13th year it came back negative. So, my GP said I didnt have Lupus and left it at that. 5 years later I had the hives, a few years ago I had pain in my foot, this last year I had carpal tunnel surgery on my right wrist due to pain. Now I am diagnosed with aggressive RA. Has anyone else had a history similar to mine? Do you think all of my issues are RA related? It has been a long 20 years of frustrations!! :(

7 Replies

  • I have heard the methotrexate can cause a rash. I am 58 and was diagnosed with RA 4 years ago and have never been able to get off the prednisone. I tried but got too much joint paint.

  • Methotrexate didn't work for me either, side effects were awful with no relief of RA symptoms. My rheumatologist prescribed Enbrel and it has made all the difference. Best wishes to you

  • what were the side effects? My doc want me to start Meth. thanks

  • I felt nauseated, wanted to sleep all the time, no energy....like I had the flu plus I didn't really notice any pain relief. It just didn't work for me.

  • Arrlly1,

    I am so very sorry for the runaround. You must be very frustrated.

    I am so sorry, Jo

  • Thank you Jo! 😃

  • Methotrexate worked for me, I wanted to get off of it because my hair was falling out. I was switched to leflunamide and then after 4 months started on Xeljanz. I chose Xeljanz because I was NOT a fan of giving myself an injection like people on Enbrel or Humira.

    Now 3yrs later I am on Xeljanz only.

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