New Seronegative RA
Hi
Until a week ago hardly understood the term RA. I have been having flare ups on my first MTP joint since I was about 28 (I turn 40 this year). It would usually appear overnight and be red-hot angry pain where even changing positions would cause a rush of blood and put me in excruciating pain. This has always been diagnosed by GPs (and a Rheum) as typical gout due to the fact that it is a single joint, the most common joint impacted by gout and onset and severity of pain. These flareups would also self resolve within the week and were far and few between (total of 5 incidences between 28-40). Blood tests during this time also returned negative Rheumatoid Factor and Anti-CCP results. The only thing that prevented a definitive gout diagnosis was that my uric acid levels have never been high and they have never successfully extracted sufficient fluid from the joint for analysis.
About 2 years ago after my last flare-up, the fiery pain subsided after a week but I had ongoing low grade inflammation (synovitis) for 3 months. Oral steroids, colchicine and NSAIDs didn't do much and in the end a cortisone injection to the joint was the thing that finally resolved it.
Then two months ago - I contracted COVID and had another flare up on the same joint (other foot compared to 2 years ago). This time I went to see a rheumatologist during the flare up as previously I only saw him after the GP prescribe the steroid jab and it was resolved. He still believed it to be gout and ordered a dual energy CT scan. Having not picked up any evidence of crystals he changed his diagnosis to seronegative RA and asked me to begin methotrexate. I was very hesitant to start this as it almost felt like he had changed his diagnosis on whim and also given severity of my symptoms appeared far and few between. I also none of the risk factors associated with RA (no family history, male, non-smoker, low BMI)
My GP prescribed another cortisone injection which I took last week and it has largely resolved the issue on the big to joint.
The only thing different this time round is I am started to get low grade metatarsalgia on both my feet (the fatty area under all toes on both feet). I've never had this before in previous attacks and I am now taking the RA diagnosis a lot more seriously. I am now starting to think about beginning methotrexate but am also about to head abroad for a month, so am somewhat hesitant to start.
Mainly sharing as this has come as a bit of a shock for me, from the diagnosis to gradual acceptance that I might have it and also not having anyone else to share it with. I am considering waiting for a bit to see if it auto resolves like it has in the past and/or trying to speak to another rheumatologist on my return but at the same time I am concerned that my joints might get damaged if I wait. I have had previous scans on the big toe joint (xray, CT, MRI, ultrasound) and so far there is no evidence of any damage at all....
Anyone else had symptoms of RA that look like this?
Thank you for sharing your story and reaching out. Glad you have found out community and I hope that we can be a source of helpful info and support to you as you navigate this. I'd encourage you to speak with your doctor about your questions and reservations about starting a new treatment just before traveling. Or perhaps seek out a second opinion. In addition to speaking with your doctor, this is a great highlight of others in out community who share their experience with a seronegative diagnosis: https://rheumatoidarthritis.net/spotlight/seronegative-diagnosis. Also, this article gives more info on Methotrexate: https://rheumatoidarthritis.net/treatment/methotrexate. Be sure to look into resources and a recommendation for a physician in the area you are traveling to in case something should come up it would be important to have a trusted physician to speak with there. Wishing you some answers and relief ahead. Best, Kelly, Rheumatoidarthritis.net Team Member
thanks for the quick response and also the references, it's good to have something to read up on and also a community =).
I am sorry you are experiencing all these issues. The pain must be awful. I hope some of your doctors will get to the bottom of it.
As I start my reply, please do know that I am not a doctor, and even if I was, I could not diagnose or suggest a treatment online. That is done to protect you from an inappropriate diagnosis.
Now having said that, I can honestly say I have not heard of a case as you describe. So many times, though, these things are completely individualized. How you were diagnosed is much different from how I was diagnosed, which is also much different from the next.
My suggestion is to continue your consultation with your rheumatologist and follow their advice. RA is a complicated disease. No single test or procedure can definitively diagnose a person. Thus it is usually wise to stay in touch with a rheumatologist you trust and follow their lead.Thank you, I think I will get a second opinion on this. I remember being somewhat shocked and how quickly my rheum pivoted and asked him if he was sure. His response was along the lines that this was the working hypothesis as nothing else fit the pattern so let's try methotrexate, see how that goes before looking at other options. I now know RA can be hard to definitively diagnose particularly if seronegative but this does feel very sudden!
After thirty some-odd years of RA, I have pretty much seen it all. Seronegative RA as well. Yes, my blood tests never show or ever showed the markers for RA, just the overall inflammation marker (ESR). Fortunately after years of searching, I found a rheumatologist who not only believed me but spent the next 20 years trying to find a medication regimen that worked. He eventually did, believe it or not, but by then the damage was done and now I spend most of my time mitigating it with surgeries. I guess the point to take away is you're not alone! There are many of us and we are here to do whatever we can to help! Keep on keepin' on, DPM
