MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
I am at the end of my rope. In Jan 2013 I was diagnosed with Sjogren's because of dryness and slight joint pain. Then, I developed worsening joint pain with more affected areas, so my rheumatologist thought I was developing either RA or lupus.
My ANA has always been very high and my RF elevated, but not as significant. However, my CrP has always been normal with an elevated ESR. So, my rheumatologist was thinking it was more a lupus presentation than RA.
I recently got a new doc closer to home for me, and started a clean slate to see what he thought of the previous tests I had and my presentation. He actually did an X-ray of my hands (which I was asking the other doc for a year and never received because of my normal CrP). and I have "small changes" in my hands. So he is convinced it's more of an "RA picture."
My question to all of you is ---- Has anyone presented similar to this? Is MCTD a diagnosis of exclusion when something else isn't screaming in the doctor's faces (like classic RA or lupus)? And how in the world do you treat this? I've been on methotrexate for two months now and swear i am getting worse.
Thanks in advance- Nicole
My ANA has always been very high and my RF elevated, but not as significant. However, my CrP has always been normal with an elevated ESR. So, my rheumatologist was thinking it was more a lupus presentation than RA.
I recently got a new doc closer to home for me, and started a clean slate to see what he thought of the previous tests I had and my presentation. He actually did an X-ray of my hands (which I was asking the other doc for a year and never received because of my normal CrP). and I have "small changes" in my hands. So he is convinced it's more of an "RA picture."
My question to all of you is ---- Has anyone presented similar to this? Is MCTD a diagnosis of exclusion when something else isn't screaming in the doctor's faces (like classic RA or lupus)? And how in the world do you treat this? I've been on methotrexate for two months now and swear i am getting worse.
Thanks in advance- Nicole
Hang in there! Are you on anti inflammatories also? My Rheumy always starts with the anti inflammatory (NSAID) adds Prednisone, then Placquenil and Methotrexate....
Your feelings of frustration are valid. Hang in there!
My opinion: If you do not have pulmonary involvement, or symptoms are not interfering with activities of daily living, STOP the methotrexate.
This is not a medical opinion, I'm not a doctor. Just tell him that in general, people in this group who don't have severe illness tend to begin a slow decline when they start MTX.
No, MCTD is not a diagnosis of exclusion when others diagnoses are not obvious. The main marker for MCTD is a high titre of Anti-RNP antibody plus serious symptom involvement.
Different diagnostic protocols have slightly different criteria, but the bottom line is, high anti-RNP, and symptoms bad enough to make you feel like crap, or keep you out of work, or affect major organ function, or blood clots, or pericarditis, or Raynauds, or dry mouth bad enough to rot teeth, dry eyes bad enough to cause crippling headaches? That's MCTD.
Same situation but high titre of anti RNP would be lupus.
High ANA is not specific to any immune disorder, but it usually indicates some disease activity. It means you're not in remission... usually.
Methotrexate is a very strong, very toxic drug. Save that in the arsenal until you really need it.
I've had some serious issues but my rheumy shies away from MTX.
Also it is not a blanket solution. Some people don't respond well to this or various other drugs.
It is brilliant for you to consult a 2nd physician.
I have Sjogren's as well and live in a pretty extreme weather environment, single digits in the winter to triple digits in the summer. Let me know if I can give you any tips that have worked for me.
Take good care!
I am on NSAIDs - I take Meloxicam (along with Plaquenil and MTX).
My worst symptom is by far my joint pain. It is crippling, more on my days off of work because I sleep in until 8 or 9 AM and can't move when I wake up. Otherwise, I'm up at 4 AM for work and hop in a hot shower and am stiff, but can manage pretty well. They titrated me up on the MTX pretty fast - it's been only two months and I'm already at 20 mg because they want to see if it will work or not
I do have dental caries often due to dry mouth and I have suffered with dry eyes but this seems to have gotten better since my joint pain took the wheel. I also was hospitalized for ? pleurisy/pericarditis.
I know my anti-RNP has been positive in the past, and I've had a speckled ANA pattern w/ sjogrens antibodies positive as well. I don't know how high my titer was tho :/
Mary Ann
Mary Ann
If you're interested, Check out the dailymail.co.uk, which ran an article yesterday blaming Neanderthal genes for present day autoimmune diseases. Don't have the link but you can Google it. Blame those damn Neanderthals! :)
Mary Ann
Mary Ann