Has any one of my good friends here been tested/diagnosed with dermatomyositis? I have always wondered if my RD diagnosis was off target, especially being sero-negative. I am on Enbrel and very much under good pain control, but my new Rheumatologist did a thorough exam and noticed that my hands were rough and the nail beds red with jagged cuticles. She ordered blood tests for dermatomyositis and anti-synthetase syndrome. Any comments or personal experiences are much appreciated.
Thank you all so much!
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shareasmile
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It's good that the rheumatologist is being so thorough, but a bit alarming for you.
I certainly thought about dermatomyositis about ten years ago when I had a flare which affected my muscles more than my joints. The tests were negative and ten months later I had another flare classically affecting the wrists and m/p joints which clinched the diagnosis at the time to RA.
But since then it's been suggested I might have psoriatic arthritis... despite not having psoriasis! And gout...
I think that rheumatologists often have a very fixed idea of how RA should behave and when it varies from that, especially in a sero-negative person, they look for other diagnoses. Perhaps that is a good idea, but from the patient's point of view it is a bit unsettling!
I agree with Oldtimer - and relate entirely to the situation you find yourself in. I have the same worry hanging over me now with multiple myeloma - which my bloods and symptoms point to so two rheumy's have suggested. However yesterday - at long last - I learned that my immunology has changed from equivocal to a clear positive and this includes my ANA. So I'm being tested with lip biopsy and MRI for primary Sjogrens or MCTD or Lupus or Vasculitis. Like you I've never felt comfortable with my seronegative, non erosive RA diagnosis so I feel this is progress. I think it is important to be guided by your instincts as well as clinical signs and symptoms. But it's also great that Embrel is helping with the pain. Good luck with the results of these investigations. Twitchy
Hi Twitchy! Our stories certainly sound similar, both searching for answers to these crazy symptoms and test results. As I told Oldtimer, my ANA came back strongly positive this time. I've not had a result like that before. Now to wait for the next results in 3 weeks. I hope you can stay mentally and physically strong for all of your upcoming tests. I wish you all the best!
The waiting and uncertainty over diagnosis is complete hell. I sometimes wonder if it's worth having all this newly acquired knowledge or if it just increases the worry overall. I think I'd rather realistically anticipate bad things to a certain extent, but also to trust my own deep down instincts because they've proved right for me over those of others time and time again since my RA was diagnosed. My instincts got me through a colonoscopy on Thursday with no worry that anything bad would show beyond a couple of bleeding haemorrhoids and I was right!
So all strength to us both over the coming months. It's good to read up while you wait, but then ask yourself "do I feel sick enough to actually have A or B?" and hopefully the answer will be no. Xx
I agree with you, Twitchy! Since the Enbrel has been effective, I could have quietly succumbed to the RD diagnosis and not had a worry over the questions in my head. But like you, instincts take over and now I feel it is important to get a correct diagnosis. I am thankful to have found a Rheumatologist that will help me get to that end.
I have so much joy in my life, I don't want these questions to dampen my spirit, but I will be relieved to get a more accurate diagnosis.
And yet another similarity for us--I had the same result as you from my colonoscopy!! Haha!
I received a note from my new rheumatologist today. She had ordered a new ANA test also, which came back strongly positive. That's the first time I've had a strongly positive result. She now thinks the result along with my signs and symptoms are suggestive of SLE, MCTD, or synthetase syndrome more than RD. Waiting now for the rest of the results.
Oldtimer, thank you so much for taking the time to respond. I am officially unsettled!
I have a friend with dermatomyositis, who was originally thought to have psoriatic arthritis. She seems to be coping well enough with it, with only intermittent treatment (as she didn't want to take either hydroxychloroquine or steroids long term)
My new doc told me she had a recent patient that had a PsA diagnosis and then changed to dermatomyositis. She was also doing well. I think that diagnosis is off the table now for me as I explained to Twitchy and Oldtimer above.
Now playing the waiting game for the rest of my blood results.
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