Diagnosis just changed from lupus to MCTD...

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CelticCail
New Member


Date Joined Jun 2010
Total Posts : 8
   Posted 6/19/2010 7:47 PM (GMT -7)   
In 2008, I was diagnosed with lupus based on clinical symptoms and a positive, speckled ANA. I was on prednisone for nearly 5 months, but then I've been fine since the end of that year.

I just got my second flare ever and new bloodwork shows very high anti-RNP antibodies (7.5); along with the clinical symptom of acrosclerosis (sausage fingers), my diagnosis was changed over to MCTD, which is like a new mystery for me to uncover.

I got very comfortable with the lupus diagnosis and learned everything there was about it, read all the books and papers (I'm a biology professor). Now I feel lost again, having to learn about scleroderma and polymyositis, both of which seem infinitely scarier than lupus. Sigh.

I'd love to hear from anyone who's had MCTD for awhile, how it progressed, if your diagnosis changed again at any point, if one of the overlap diseases started taking presidence, etc.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 6/20/2010 7:38 PM (GMT -7)   
Welcome to the mctd world.  Not sure if it is scarier than lupus but it is more complicated.  Like lupus every case is different and you can exhibit symptoms of any of the 3.  Lupus hit me first (swelling/redness, weakness, fatigue, joints, gi tract, kidneys) and then PM hit me like a freight train even though I had been on 60mg of pred.  I lost 40 lbs of muscle in a week and started 2006 as a quadriplegic and could not swallow.  My case was resistant to prednisone and it took ivig to save me from liver failure.
 
The good news is that I have made an impossible recovery and returned to an active life but have lost a significant amount of muscle cells.  PM can, but not always, destroy muscle cells and those cannot be replaced.  My case was extreme and many with mctd have fairly mild cases but you should be alert to any new symptoms.  Particularly muscle weakness.  PM hits the proximal muscles around your hip and shoulder girdles mostly but can hit anywhere.  Swallowing problems are also common so be alert for any changes.
 
Scleroderma did not bother me too much...probably only raynauds phenomena.
 
There is no way of predicting how your mctd will progress or if it will at all.  Pay more attention to symptoms rather than labs.  There are no tests that really measure PM.  You will have cpk and aldolase and maybe sed rate but none of them are myositis specific.  Many with pm can have normal labs (cpk) but still be very sick and weak.  The inflammatory process is very complex and cpk only measures one aspect of it. 
 
You should also post on www.myositis.org.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


crazykitty
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Date Joined Jul 2009
Total Posts : 4796
   Posted 6/21/2010 7:59 PM (GMT -7)   
Hi Celtic Cail, I have MCTD and Fibromyalgia. I usually post on the fibro forum.
My MCTD is an overlap of Lupus, Scleroderma and RA. Repeated bloodwork showed
a high positive RNP. I had a skin biopsy that was positive for a variant of scleroderma.
My right arm is showing some atrophy with a 3" dent in my forearm and linear morphea.
The skin on my face is becoming thicker and tighter. My hands swell and my knuckles
become red and swollen. My knees, elbows, ankles and feet are prone to swelling too.
At times, I will get rashes and burning red areas on my body. I also have Raynauds.

Initially, I was on Plaquenil and Azathoprine for the MCTD, now I'm on Methotrexate
and take Ditiazem for Raynauds. I believe the Merthotrexate has helped slow down
the progression of the disease. I also have other health issues going on, so it is trying
at times. I take one day at a time and keep as active as I can. I believe it is possible
to live a wonderful life no matter what you have. Try to stay positive and enjoy life!

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 6/22/2010 11:09 AM (GMT -7)   
Robin,
 
Actually, MCTD by definition since 1972 is SLE, scleroderma and polymyositis.  It has been broadened to myositis by some and often includes symptoms like raynauds, ra, and others.
 
 
 
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


CelticCail
New Member


Date Joined Jun 2010
Total Posts : 8
   Posted 6/22/2010 11:46 AM (GMT -7)   
Bill: it seems that is an overlap of basically any autoimmunes these days, including RA. The 1972 definition is a bit out of date according to my own research, and my rheum is in agreement regarding the definition being tailor fit to specific circumstances/people.

Thanks both of you for your input!

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 6/22/2010 3:15 PM (GMT -7)   
The definition of mctd is the same as it was in 1972.  Many people with mctd also have other AI diseases it seems.  Most rheumys will not even treat a case and if they treat 5 in a long career that is a lot unless he or she works in a large university clinic. 
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 6/22/2010 4:16 PM (GMT -7)   
Bill, I do have some signs of polymyositis. I do at times have muscle fatigue and inflamation.
Climbing stairs is sometimes difficult and my upper body strength is somewhat weak. My
hip area is sore too.

I did have a EMG to evaluate my muscles but it didn't show any damage. My RA symptoms
are more prominent... so I stand by my overlap of Lupus, Scleroderma and RA. My rheumy
calls it MCTD...and the main thing...my symptoms are being treated.

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


sweatpea
New Member


Date Joined Jun 2010
Total Posts : 1
   Posted 6/23/2010 8:58 AM (GMT -7)   
Celtic Cail,

I just received this diagnosis as well. My skin symptoms started more like Lupus--discoid rash in January, but quickly morphed in into a dermatomyosits pattern (shawl sign, gottron's papules etc...). Symptomatically, the doctors said I have dermatomyositis. My skin signs are classic DM. I also have some muscle weakness and a lot of muscle pain. I am also having trouble swallowing and am having a barium swallow test and nanometry (?) today. However, I have no inflammatory markers in my blood work. My CPK (110) and Aldolase (5.2) levels are normal. Instead, the doc says my blood work looks like Lupus. He is calling it MCTD--Lupus with DM for now. I also have had Hashimotos for years.

I'm not sure what is relevant but my lab work showed low WBC count (low lymphs, high monos), ANA titer 1:2560, speckled pattern, low complement C3 and C4, high Thyroid Microsomal AB, very low Vitamin D, elevated AST and ALT, GRF--mildly reduced, normal Rhuematoid factor.

I am very confused and trying to keep a positive attitude about this. I started taking Plaquenil and Vitamin D yesterday.

I'm not sure this diagnosis is going to stick or if it was given for insurance purposes so that I can get on drugs and continue testing.

I too would be interested in hearing from people with myositis/Lupus. I am going to post this on the myositis board too and see if anyone has anything helpful to say!

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 6/23/2010 10:38 AM (GMT -7)   
In order to diagnose mctd labs must show the presence of anti rnp antibodies.  You can test negative at first so it might take several months to show up.  MCTD is a complicated disease and presents and responds to treatement differently in each case but most cases are relatively mild and treatable.  MCTD is often accompanied by other AI diseases which make things even more complicated.  My case was extreme but I have recovered and now lead a fairly normal life despite the tremendous damage done to muscles and lots of organ involvement.  Plaquinel is a relatively mild suppressing med and if that does not work I am sure your doctor will try other meds like predsnisone, imuran, and methotrexate, or other treatments.  Many of these meds take months to become fully effective.  Pred and ivig are fast acting.
 
Hang in there and if you are not satisfied with your progress get a second opinion but make sure the doc is experienced with AI diseases. 
 
Bill
 

Laboratory Studies

  • CBC count
  • Urinalysis
  • Routine blood chemistry
  • Muscle enzymes if myositis is suspected clinically
  • Antinuclear antibodies
    • High-titer speckled pattern fluorescent antinuclear antibody (FANA) is typical of mixed connective-tissue disease (MCTD).
    • FANA is not specific to MCTD.
  • High titers of anti–U1-RNP antibodies
    • Anti-RNP antibodies are required for diagnosis of MCTD.
    • The presence of anti–U1-70 kd is characteristic of MCTD.
  • Other immune studies
    • Antiphospholipid antibodies (including anticardiolipin antibodies and lupus anticoagulant) may be associated with pulmonary hypertension. In MCTD, however, the presence of these antibodies has not been associated with clotting events.
    • Rheumatoid factor is frequently detected.
    • Other lupus-specific antibodies (eg, anti–double-stranded DNA antibodies) are absent.
    • Scleroderma-specific antibodies, including anticentromere, anti–Scl-70 (topoisomerase), and anti–PM-1 (Pm-Scl), are absent.
    • C3 and C4 complement levels are more likely to be depleted in lupus than in MCTD
  • Amylase and lipase - To assess for pancreatitis if clinically indicated

Imaging Studies

  • Chest radiography - To assess for infiltrates, effusion, or cardiomegaly
  • Echocardiography - Used to evaluate for effusion, chest pain, pulmonary hypertension, or valvular disease (An exercise echocardiography may increase the sensitivity to identify pulmonary hypertension.)
  • Ultrasonography/CT scanning - Used to evaluate abdominal pain (indicated for evidence of serositis, pancreatitis, or visceral perforation related to vasculitis)
  • MRI - Used to assess neuropsychiatric signs or symptoms

Other Tests

  • Pulmonary function testing - To screen for declining diffusing capacity of lung for carbon monoxide (DLCO), possibly indicating pulmonary hypertension
  • ECG and/or cardiac enzymes - To assess for myocardial ischemia and myocarditis
  • Cerebral spinal fluid (CFS) analysis - To monitor for infection, stroke, or neuropsychiatric manifestations
  • Six-minute walk - To assess for cardiopulmonary insufficiency, possibly indicating pulmonary hypertension

Procedures

  • Right-sided heart catheterization is the criterion standard for diagnosis of pulmonary hypertension.

Staging

  • MCTD can enter sustained remission later in the clinical course. Anti-RNP autoantibodies typically become undetectable in patients in remission.

MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.

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