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Diagnosis

Newly Diagnosed – AI Disease #3

  • By AnnP

    Hello, hello, hello! Well, where to start? 62 yrs old, tiny female. Dx’d with celiac disease in 2011. I have dermatitis herpetiformis aka the celiac rash which is the skin presentation of celiac disease. I also have been dx’d with Reynaud’s. Now I am newly dx’d with RA.
    This dx has gone pretty quickly for me. I pretty much figured out I had RA when I googled my symptoms & then I went to my PCP & described my symptoms to him. He ran serum. Ha! It’s kinda funny b/c I am sero negative on celiac (the rash is the key there) but I’m sure not sero negative on RA. My RA Factor is 132 with a ref. range of <14. CCP is >250 with ref. range being >59 as strong positive. ANA Screen is positive with ref. range as negative – you’re either positive or negative on that. ANA Pattern is speckled. ANA Titer is 1:40 which is high. After these results, my doc ordered some more labs. He wants to rule out Lupus & Mixed Connective Tissue Disease (MCTD). We are still waiting for the results on those.
    My doc also had me tested for TB in anticipation of putting me on meds for the RA where you have to make sure you don’t have TB before starting. He also ordered some X-Rays of my wrists, hands & knees. The good news is that we caught this early, very early from what I am reading from my research thus far. It seems only my left hand has permanent damage & that damage is very mild & basically confined to 1 joint on my middle finger. So all in all, at this point, I feel pretty lucky.
    Doc has prescribed 7.5 mg methotrexate orally once a week & 1 mg. folic acid daily. I have not started it yet as I have to send the script off & the meds get mailed to me so I am just waiting for them to arrive. I was totally freaked at 1st b/c the methotrexate is a chemo drug. YIKES!!! I’ve had a bit of time now to do further research into it as well as just let it sink in mentally. I certainly don’t need permanent damage & no one needs pain right? I’m going to have to give the RX a go. As it is, I’ve been living off of Advil to the tune of an average of 9 per day & still I have times of pain. It isn’t unbearable yet though & I’d love to keep it that way if possible. Doc did not go with prednisone b/c I am so small & can’t afford any bone loss. Suits me fine, b/c I have had steroids before in my life & I hate them! They make me bounce off the walls.
    The bottom of my feet are the worst I think. They feel swollen & painful every single morning. This has been going on for about 6 months now. It was intermittent in the beginning but for 3 or 4 months now, it’s every single morning. I think what really rang the bells for me was in August, I had what I now know was a flare. I felt like the rusty tin man who was in terrible need of some 3 in 1 oil. That was body wide & lasted around 6 weeks. It was painful & frustrating as hell.
    I did not mean to make such a long drawn out post but did want to introduce myself & give some background.
    I would love to hear from others who have been on methotrexate. What dose were you started on, was it increased, did you experience any side effects & if so what were they?
    Thanks for reading!

    reply
  • By Richard Faust Moderator

    Hi AnnP. Sorry to hear about the diagnosis, but it sounds like you are rapidly taking steps to get things under control and have a positive attitude.

    Some trepidation with starting methotexate is completely understandable, but know that many have used it successfully and if it would turn out not to be the drug for you there are plenty of options. This article from our editorial team gives an overview of methotrexate: https://rheumatoidarthritis.net/treatment/methotrexate/. In this article our contributor Monica discusses her experience with the drug: https://rheumatoidarthritis.net/living/fearing-methotrexate-side-effects/ and in this one our contributor Carla looks at research indicating the methotrexate may be under-utilized as an RA treatment: https://rheumatoidarthritis.net/living/methotrexate-under-utilized/.

    Hopefully others will chime in with their experiences. Know that people here understand and that you are always welcome her for information and support. Best, Richard (RheumatoidArthritis.net Team)

    reply
  • By AnnP

    Thank you for the welcome and the links Richard. I appreciate it.

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