Lupus, MCTD, or Scleroderma? Help...

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vandygrad97
Regular Member


Date Joined Nov 2003
Total Posts : 66
   Posted 10/4/2012 9:04 PM (GMT -6)   
Hi everyone,
I usually post on the Crohns board, so this is new to me, although I have been having symptoms of a connective tissue disease for at least 5 years. My recent blood work finally came back positive with the following results: ANA, Anti-Jo-1, Scl-70 and RNP. My Anti-SM and Ssa and Ssb were negative. My skin biopsy also came back positive for lupus. Does any one else have these positive blood tests? I am obviously leaning toward MCTD since each area is covered including a positive rheumatoid factor, CRP, and Sed rate. I am definitely freaking out about the positive scleroderma test. Can that be positive in lupus? ...please advise.










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Current Medications: Nexium 40mg-2X, Entocort 9mg, Pentasa 500mg-8X, Vitamin D and Calcium, Iron supplements, Vitamin B-12 monthly injection

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/4/2012 9:40 PM (GMT -6)   
Sorry, I'm still learning things myself...I couldn't tell you.

I'm sorry you're having to face this challenge in your life. But Lupus is not a death sentence. You just have to be more dilligent in your health care.
I was diagnosed last year with lupus after suddenly coming down with all of the classic symptoms.

Stick around, there are others here who are more knowledgable about this stuff. Meanwhile check out lupus.org and lupus.us.com websites for more information.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 541
   Posted 10/5/2012 11:01 AM (GMT -6)   
I was diagnosed with MCTD in 2005. My rheumy has always treated it the same way you would treat Lupus. I take Plaquenil, Methotrexate and steroids when needed. I know it is scary to think you have more than one disease, but for me I just always think of it as all rolled into one since the treatment is the same for me.

I was just recently diagnosed with Pulmonary Hypertension which can be caused by MCTD. So now I am on strong diuretics.

The best thing you can do is make sure you a good doctor that you trust and do exactly what they say.

There is a man named Bill on these boards who is the expert on MCTD. Hopefully, he will be on soon and maybe be able to answer more of your questions.

In the meantime try not to worry, stress makes things worse.

Hugs,
Mary Ann

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 10/5/2012 9:51 PM (GMT -6)   
Sorry you are in diagnosis hell.  Autoimmune diseases often overlap.  MCTD is a specific diagnosis and can include symptoms of sle lupus, scleroderma and polymyositis.  It was first identified in 1972 and today often includes dermatomyositis and ra.  Every case is unique.  You can present with symptoms of one disease and then progress to the others.  I presented with lupus and then polymyositis.  Scleroderma did not affect me except for raynauds phenomenon.
 
To diagnose mctd your the anti rnp antibody has to show up.  Otherwise, it will be called uctd (undifferentiated connective tissue disease).  Based on the information you gave it seems like you have mctd. 
 
Every case is unique and many I have seen are mild and controlled.  Actually, mine was the worst of anyone I have ever spoken but was brought under control.  Don't freak out.  You are not new to autoimmune diseases so you should have a good understanding of them.  They are not like other diseases.  Just make sure you have an experienced rheumy treating you.  I had an extreme case but it was finally brought under control with ivig and I have been in remission since Jan 2006. 
 
Where do you live?  Let me know what other specific questions you have.
 
Bill

vandygrad97
Regular Member


Date Joined Nov 2003
Total Posts : 66
   Posted 10/10/2012 10:48 AM (GMT -6)   
Thanks everyone. I am leaning toward MCTD as well, but definitely have more symptoms of lupus right now. Although, listening to each of you, that sounds pretty normal. I live 90 miles from the DC/Baltimore area, and actually have an appointment tomorrow at the Johns Hopkins Lupus Center. I figure if anyone can piece all of this together, they can. I go to Hopkins for my Crohn's and have been amazed at the amount of care and knowledge they present. Fingers crossed that I receive an official diagnosis tomorrow with some steps towards treatment. After all, these symptoms began 20 years ago, so it's about time!

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1916
   Posted 10/14/2012 5:42 PM (GMT -6)   
Vandy, I am sure Johns Hopkins will get it figured out. Most of the treatment is the same for many of the AI diseases. I've struggled with a lot of symptoms, a few positive tests but that's about it. My doctor thinks it's RA, but I have increased pain with sun which points to lupus, so I am confused. I hope you get some answers and feel better soon. That's what we all want!
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
seronegative RA, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r
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