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Do you have Mixed Connective Tissue Disease?

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Posted 9/22/2012 4:37 AM (GMT 0)

I am so confused!

I have been diagnosed with, and treated for, lupus for 2.5 years. In the process of securing a second opinion regarding a move to immunosupressent medications, the second opinion rheumy says that I have tested highly positive for Mixed Connective Tissue Disease. (I believe that's the anti-RNP anitbody.)

She told me this over the phone today, and I wasn't that alarmed. I began doing research on MCTD this evening, and I am learning that I really do *NOT* have any of the symptoms, with the exception of lung issues. This second-opinion rheumy says I am exhibiting symptoms of pulmonary hypertension, and she wants me to come in and see a pulmonogolist in her practice.

Again, I am so confused! Are there others out there who have been diagnosed with MCTD, but don't seem to be exhibiting any of the symptoms listed on such sites as the Mayo clinic or Cedars-Sinai? I don't want this second-rheumy to treat the lab test results. I want her to treat *me*.

Any advice or experiences you'd be willing to share would be greatly appreciated.

I was just learning to live with lupus, and not this crazy poop has to go and come up!

Appreciatively yours,

Nina

Posted 9/22/2012 4:51 AM (GMT 0)
Maybe I'm remembering something incorrectly, but I was thinking that all these auto-immune diseases are overlapping to the extent that there isn't that clear a definition between them...resulting in similar unclear demarcations between treatment plans. If you review the Lupus Resources sticky thread (top of the list) there is an article that talks about the pattern of the ANA results helping narrow down diagnosis...maybe that will help you?

I know some rheumies tend to stick to the MCTD and UDTD diagnoses when things are unclear. And are the treatment plans much different? Since so many of us take so long to get a firm diagnosis, my doctors are more interested in treating and alleviating symptoms and not focused so much on the exact name...which has always made perfect sense to me.

In short, I don't think the change in name means a whole lot -- your symptoms are still your symptoms, and your symptoms are still what they should be treating. Try not to worry!
Posted 9/22/2012 4:55 AM (GMT 0)
PS. If you mean a move to Imuran, Cellcept, or MTX...they can do wonders and often with minimal side-effects. For each person it is hit-or-miss which of the 3 will work -- some here have had great results with Imuran, while Cellcept did nothing for them. Others of us have great results with Cellcept, when Imuran didn't do much. Same with MTX - works for some, not others, no way to predict.

In my case, Imuran did nothing, but 18 months of Cellcept gave me back my brain (I had fairly intense cognitive dysfunction)!

Hope you feel better soon,
Posted 9/22/2012 5:02 PM (GMT 0)
Nina,

The fact that you have SLE lupus and have tested positive for the anti RNP antibody is a definite diagnosis of mctd.  UCTD, in contrast is often used when there is an overlap but it is not clearly defined by symptoms and/or labs.  MCTD is a specific diagnosis and classically includes sle lupus, scleroderma and polymyositis.  Since this overlap disease was defined in 1972 some researchers have included other diseases into the mix: RA and dermatomyositis the main ones.  That does not mean you will have symptoms of 3, 4 or 5 diseases.

Understanding overlap diseases is difficult.  If lupus is the disease with a 1000 faces then mctd has 10000.  You can present with one disease but never show symptoms of the others.  Your disease can progress and present with symptoms of the other diseases or not.  I have known many with mctd and each case was different in presentation and progression.  Most were fairly mild, except mine.  Treatment is similar to lupus: prednisone first line treatment, other immuno suppressants, biologics (ivig, rituxan) and other treatments.

My case presented as lupus but within a short time I had severe muscle weakness and fatigue.  I was put on 60mg prednisone but  the disease rapidly progressed and it took ivig to suppress the polymyositis symptoms.  Lupus hit me hard: all joints, kidneys, entire GI tract, and cognitively.  Scleroderma has not really been a problem unless you can blame it for raynauds phenomena which can also accompany lupus or pm without the overlap.

How are you currently being treated?

http://www.medicinenet.com/script/main/art.asp?articlekey=16955

http://www.patient.co.uk/doctor/Mixed-Connective-Tissue-Disease.htm

You have been dealing with lupus for over 2 years and dealing with mctd is not much different...you just have more things to consider.  My experience is that most patients tend to develop symptoms of 1 or 2 of the possible diseases with one being the worst.  In my case it was pm followed by lupus. 

By the way, even though my case was extreme I have been in full remission since Jan 2006 and off all controlling meds for over a year.

Bill

 

Posted 9/22/2012 5:52 PM (GMT 0)
Thanks, Bill. You are still our reigning expert on MCTD/UCTD!
Posted 9/28/2012 11:50 PM (GMT 0)
Dear Lynnwood and Bill -

Thank you both for your prompt and very helpful replies! I was in such a tizzy last Friday, and I really appreciated your responses!

Bill, I especially appreciate all that you shared with me, and the encouraging tone of your note. I am so pleased to hear that you are enjoying a period of remission.

I followed up with my new rheumy, so we could discuss the MCTD and SLE face-to-face. This was very helpful/comforting. It's certainly not a good diagnosis, but this new doc is extremely knowledgeable, and I feel I am in good hands.

I am currently taking 300 mg Plaquinel, and next week (after resolving BlueCross/BlueShield RX shenannigans), I will begin taking a low dose of CellCept, with the idea that we'll increase the dosage after we re-test my liver, kidneys, and CBC.

My new rheumy has also set me up with a pulmonolgist, and ordred a pulmonary function test, and a high-rest CT scan of my chest as, unfortunately, there is lung involvement, and she hopes to rule out pulmonary hypertension at this time.

Thanks again, and Bill, would it be OK if I reached out to you for advice/handholding again in the future?

Warm regards,

Nina

Posted 9/29/2012 2:28 AM (GMT 0)
Hi Nina,

I have MCTD also. I was diagnosed in 2005 and have been on Plaquenil, Methotrexate and steroids when needed. I was just diagnosed with Pulmonary Hypertension last month. My doctor put me on Lasix for right now. I am allowed to do some walking but nothing strenous.

This is a great place to come for support. Let me know if I can do anything for you.

Take care,

Mary Ann
Posted 9/29/2012 4:24 AM (GMT 0)
Nina,

You can ask me questions anytime.  If you need to talk on the phone or by email for more privacy that is ok.  I spend a lot of my time doing support work for myositis, lupus and the disabled so I really don't mind.

Bill

Posted 10/9/2012 4:16 AM (GMT 0)
I am new to this MCTD, I was diagnosed in April 2012. Body aches and Raynauds. Body aches that turned in to major pain in upper extremities, swollen fingers, weak upper body, cannot grasp objects, cannot pinch - this is painful. I had a wierd body rash for the past 3 years. My thigh is real itchy in only one spot. I get dizziness sometimes in the morning. My memory was worse, it is getting a bit better. I have a positive RNP. I am on plaquinil, imuran and just started the new IV  med Benlysta. I am still in pain, and stopped my prednisone. I need to change my diet. I still drink coffee in the morniing and I like my sweets. I heard a gluted free diet was effective.......? I am working full time but worry about not being able to work. I push through the pain in the morning, and all night. I will be turning 50 this December.......contemplating throwing myself a big b-day party.........I get tired easily and early! now......lol :) but what the heck......we shall see...................
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