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Not sure about RA

In January 2015, I was stricken with a sudden unexplained soreness in all of my joints and most muscles below my shoulders this lasted about a week till I could see my provider who put me on 30mg prednisone for 3 days with step therapy. Well all the pain went away almost immediately but after lab work my rheumatoid factor came in at 3700 but since that one episode I have not had so much as a blip of joint or muscle pain anywhere. I have a Rheumatologist she had me do a bone density test which came back as bones of a 30 yr. old (I’m 66) she put me on 10mg leflunemide daily but all that did was to suppress my immune system to where I’ve had 5 bronchial infections and a bout of pneumonia in the last 5 months. Now I’m off that med and on sulfasalazine which started to make my facial skin flake off so that’s on hold going to try it at a lower dose next week. Personally, I question whether I even have RA because I have no symptoms. Indeed some feedback if it’s normal or possible to go 2yrs symptom free or are there other related problems at play here. Please give me some feedback your opinions and expertise in dealing with this disease can help me greatly. Thank You

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  • Eebtool
    2 years ago

    As Sneed said.

    ‘I was the best judge of what was going on with my body and she would modify meds based on what I was experiencing.’

    From what I have learned from the internet, (I am just a working guy with RA) RA is a strange thing and seems to almost never affect any 2 people the same way.
    So if you can cut down the drugs to a minimum and still be in control of RA, why not do it!

  • Maria
    2 years ago

    Having only been diagnosed with RA in November 2016, I am by no means an expert, but I can definitely relate about having doubts about my diagnosis.
    As far as I know there are 3 major lab tests for RA – Rheumatoid factor, anti-MCV and anti-CCP. The results are evaluated together to get a diagnosis. It’s possible to have a normal rheum. factor but have RA, as well as have it elevated and be completely healthy, so rheum. factor by itself isn’t a great diagnostic tool.
    I live in Russia and had to be hospitalized at a Rheumatological Hospital to get a diagnosis.
    I had an MRI of my wrist and ultrasounds of my knees done, as well as x-rays of my feet and shoulder – all joints where I had pain, and the conclusion was that with the state of my joints along with my anti-CCP positive result I indeed had RA, even though the other two tests were negative.
    So the three blood tests and all kinds of imaging got me a correct diagnosis – I’ve been on Methotrexate injections for only a month now, but my pain is down to a minimum already, which I consider the best proof. So having those procedures done can really help you get a definitive diagnosis.
    I would also advise to get a second opinion, because my first doctor assured me I didn’t have RA and diagnosed me with lupus, while only doing two of the blood tests I mentioned, while I was positive for the third and the most important one.
    And especially since you have intense side effects, it;s important to reevaluate everything, because taking medication for something you don’t have can be very dangerous in this situation.

  • Kelly Dabel moderator
    2 years ago

    Thanks so much for chiming in with your feedback Maria. Great advice to reevaluate and consider a second opinion. Sometimes taking a step back and gaining some additional perspective can be helpful to making decisions. Appreciate you being part of our community! Kelly, Team Member

  • Sneed
    2 years ago

    A difficult question. Personally, I’d have a talk with the doc about tapering whatever meds you’re on now with the goal of getting to zero if nothing untoward occurs. If something does occur you react to it with the doc; if not you go to zero and see what happens over time. If your doc objects for reasons you see as inadequate – see another one. There is no unanimity of opinion regarding dealing with any autoimmune disease in my experience. My original rheumatologist, now retired, always believed I was the best judge of what was going on with my body and she would modify meds based on what I was experiencing.

  • Hoppe author
    2 years ago

    Thanks for your feedback Im cutting back to 1-500 mg sulfasalazine a day and try to ween myself off completely and see if any repercussions. Occur Thanks again any other feedback out there?

  • Lauren Tucker moderator
    2 years ago

    You got that right Sneed! Thanks for sharing this with the community. Glad to have you here!
    Best, Lauren ( Team Member)

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