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Ruling out RA?

Hello,

I was just recently sent to a rheumatologist for suspected RA by my gynecologist after complain of joints pain. I started a hormonal treatment (Triptorelin injections) in February for endometriosis and a few weeks after that I started having joint pain on my ankles, elbows, knees... and progressively worsening pain in my hands. My gynecologist had my blood tested for RF and the test came back positive and she then referred me to a rheumatologist.

After talking him he seemed pretty confident that it could be rheumatoid arthritis as all my symptoms were pointing that way. He ordered more test to rule out other autoimmune diseases and gave me steroids and painkillers for a week while waiting for the results. I took the medication as prescribed but didn't notice any big changes on my pain level. After the week had passed when I met with him again, he told me that all my tests came back negative... even the RF factor that was positive a month before. He then said that it seems I finally don't have RA and he also told me that the fact that I didn't respond to the treatment is another proof of it. I left his office with painkillers for a week and now I am a bit lost.

Despite the painkillers working when I take them, my pain is not gone and I still have no idea where it is from...

I know RA can become pretty serious if it not treated so I want to make sure it's really not that.
I don't understand how my test can come back positive and suddenly be negative?
And does me not responding to treatment completely rules out RA?

I am a bit worried and I can't ignore the pain in my hands. I was hoping your answers can help me find some peace.

  1. Hi . Your concerns and frustration around not getting a diagnosis are certainly understandable. Did the rheumatologist have any thoughts on what your issues could be from? I need to note that we are not medical professionals and, for your protection, cannot provide a medical opinion over the internet.
    I do want to share with you this article which discusses the fact that rheumatoid factor can fluctuate in early disease: https://pubmed.ncbi.nlm.nih.gov/23378461. Of course, I can't say if this is the case for you, but want to share the information.
    I also want to share this article from our editorial team on the diagnostic process: https://rheumatoidarthritis.net/diagnosis. In addition, I want to note that there are some patients who do not test positive for rheumatoid factor (in fact, this can be around one-third of patients, particularly early). This is known as seronegative RA and this article provides more information: https://rheumatoidarthritis.net/seronegative-diagnosis.
    I hope this information provides a starting point for further discussion with your doctor. Also, if your feel your concerns are not being heard or that you are not getting answers know that you are entitled to a second opinion. Hoping that you can get some answers and relief soon. Please feel free, if you like to keep us posted on how you are doing and to ask additional questions. Best, Richard (RheumatoidArthritis.net Team)

    1. Hi . Your frustration and disappointment are certainly understandable. Unfortunately, all too many people have experienced struggles getting a diagnosis and feeling like their concerns and pain don't matter - people here get it. Your hesitancy about taking the referral and seeing a new doctor is also understandable - the question about what if you still get no answers. I want to remind you that if you don't take the appointment you definitely do not get answers. I know that you know this, but sometimes hearing it from someone else can help. Maybe this would be the doctor who will listen, take your pain seriously, and try to find an answer - whatever that may be. I don't want to sound overly optimistic and paint with rose colored glasses. The fear of more disappointment is real and valid, but self-advocacy is so important, especially when those we count on for answers fall short. Please know that this community is here for you. Best, Richard (Team Member)

    2. , I am so sorry. I want to echo everything Richard already wrote. I know it's hard to to set yourself up for more potential disappointment, but I think it's worth the risk.

      And, don't even get me started on that comment, "you didn't get the answer you wanted"! Hoo boy! That comment from your doctor ticked me off on your behalf! While a person definitely wants a diagnosis when there is obviously something wrong, no one is like, "You know what I want? An autoimmun condition. That sounds like fun!" ERGGGGHHH. I know what your doctor probably meant, but his/her delivery and bedside manner leave something to be desired.

      We do care. And we hope you get the diagnosis you deserve, whatever it may be.

      Gentle Hugs, Erin, Team Member.

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