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  • Do I have MCTD?

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    Old 02-06-2016, 01:16 PM   #1
    Ryaon23
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    Do I have MCTD?

    Hello I'm a 22 year old male just diagnosed with Raynaud's and I currently feel fine besides having a reddish purple rash on my knuckles. My doctor sent me to get blood work done and the results that stand out are

    C4C level is at 10
    My RF is at 20
    ANA is 1280 speckled
    Sm/Rnp antibody is 8

    Anyone info would be great.

     
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    Old 02-15-2016, 06:47 AM   #2
    VeeJ
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    Re: Do I have MCTD

    Hi & welcome. In MCTD, by definition anti-RNP is positive but in the absence of any other autoantibodies. But without a reference range, I couldn't guess what your RNP level of 8 signifies, whether it's positive or negative. (On my AB labs, I typically see single or low double-digits for various AB's, but most are deemed negative. i.e., AB results can be greater than 0 yet still be considered negative, so you need reference ranges to know for sure.)

    Do you have a follow-up appt scheduled? And is your doctor a rheumatologist? (I hope YES.) Even if this is "just" Raynaud's, not MCTD, you're on the "autoimmune map", so it makes sense to me that you'd see the specialist best versed in the AI's. And if you live in a cold-weather climate, I hope you're taking extra precautions to guard against the cold.

    Another thought. To read about MCTD and how it's differentiated from other AI's, you could visit your library to borrow several excellent hardcovers written by famous rheumatologists. In them, you'd find more comprehensive info than you can find online. Stay in touch, OK? Sending warm wishes.

    Last edited by VeeJ; 02-15-2016 at 06:48 AM. Reason: typo

     
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    Old 02-15-2016, 03:23 PM   #3
    Ryaon23
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    Re: Do I have MCTD

    Thanks for the info. The test range for that one is anything greater than 1 is positive. Also all other exams for negative for scleroderma and myotisis. The rheumatologist said I'm currently UCTD but will most likely develop into MCTD within the next 5-10 years

     
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    Old 02-15-2016, 04:18 PM   #4
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    Re: Do I have MCTD

    Hi. I've seen multiple sets of diagnostic criteria for MCTD, but I don't know for certain which is used in the US. In one, you must meet a certain number of "major" criteria (in addition to positive anti-RNP) plus a certain number of "minor". In another, the gist is similar, first a main set---then one must also meet some in each of 3 subcategories: lupus-like symptoms, scleroderma-like symptoms, and myositis-like symptoms.

    You probably haven't met "enough" for whatever set he uses, but I think it's good that he took the time to explain which categories you've met & which you haven't, which makes for a wiser patient. Did he prescribe any meds?

    My doctors did their "bean-counting" behind my back without telling me, and I was adrift for years until I took myself to a teaching hospital. My dx was lupus, a rare "subset" with lab findings & rashes that aren't at all usual. I'd have been wiser had I known more sooner. I'm sorry you have to deal with this but glad that you have a specialist who's all over it. We're here anytime you feel like talking. All my best.

     
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    Old 02-15-2016, 05:06 PM   #5
    Ryaon23
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    Re: Do I have MCTD?

    He prescribed me plaquenil and I dont know if I want to take that yet until I get a second opinion from another specialist.

    Another question could I have dermatomyotisis on my hand even though I tested negative for myotisis? The specialist says it's just from Raynaud's spasms while my primary says it might be dermatomyotisis since it looks like a purplish red rash on my hand but the purple only really shows when I start to get cold

     
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    Old 02-16-2016, 04:49 AM   #6
    VeeJ
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    Re: Do I have MCTD?

    I have a friend with "just" Raynaud's. Some winters, she's battled the painful purplish red rash on both feet to the point of hobbling. She's tried several meds, but her best success has been in protecting her hands & feet from exposure to cold. (She's out & around, she just got better at bundling up.)

    I've taken Plaquenil for years with great success and no real issues. It's considered a mild med. It's a common med and is used in lupus, RA, MCTD, etc. It's been around since WWII. It's steroid-sparing, meaning if it does its job well, it can prevent your needing steroids, or barring that, it can enable you to take lesser amounts of steroids than you'd otherwise have needed. Since steroids can have very serious and unpredictable side effects, Plaquenil is viewed as a wonder drug by rheums and patients.

    Some patients are scared off Plaquenil because they fear pigment buildup on the retina. One of the top lupus rheum/authors covers this concern in depth in his hardcover, which is available in most libraries. He writes that this risk is actually extremely low when Plaquenil is taken by patients without kidney impairment and in proper dosage for one's weight. Best news: if any pigment buildup is detected, you discontinue the drug and the buildup almost always reverses itself. How pigment buildup is tested: you see your eye doctor, once or twice yearly, and have a "field vision test" done. This is a simple 10-minute test. You just stare at a screen and depress a clicker when you see a bright light flash. Anyhow... I hope this helps a bit. Let us know how things are going with you. And stay really warm!

     
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    Old 02-16-2016, 02:06 PM   #7
    Ryaon23
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    Re: Do I have MCTD?

    Does plaquenil weaken your immune system? Cause I plan on backpacking Europe this summer hopefully for a month and my primary Doctor warned me that plaquenil could weaken my immune system and make it easier for me to get sick

     
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    Old 02-16-2016, 03:24 PM   #8
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    Re: Do I have MCTD?

    Hi. The two rheum/authors I recommended that your seek out in your library both strongly make the point that, unlike steroids and immunosuppressants, Plaquenil DOESN'T weaken the immune system. The hardcover I keep current on my bookshelf states very firmly, "Antimalarials do not lower blood counts or make patients more susceptible to infection."

    What antimalarials do, per this author: block skin UV damage, have NSAID-like anti-inflammatory effects, inhibit clotting, lower cholesterol, block cytokines that promote inflammation, and (best of all) alter acid-base balance in cells (which is helpful in limiting the effects of antigens). So I think your doctor was off-base in his concerns about Plaquenil suppressing your immune system, but I encourage you to research this point to your own satisfaction.

    As for European backpacking, I'd discuss with doctors. Are you photosensitive, meaning does UV trigger skin rashes or exacerbate your overall symptoms? (Those would be in the lupus subcategory of MCTD.) If you aren't, are there any other reasons NOT to go?

    I hope you keep feeling well overall, that you work thru your concerns about Plaquenil, and that you do that backpack trek thru Europe . Post anytime, we are always here.

     
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    Old 02-16-2016, 03:40 PM   #9
    Ryaon23
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    Re: Do I have MCTD?

    Thanks for the information. I currently only have Raynaud's and a rash on my hands that I stated earlier, besides those I don't Have anything else wrong right now, I don't have any sensitivity to uv rays. I feel like I gotta do all my traveling now while I'm still physically healthy before the disease I guess takes full effect.

     
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    Old 02-16-2016, 04:28 PM   #10
    VeeJ
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    Re: Do I have MCTD?

    I don't believe that either UCTD or MCTD *necessarily* advances. Meaning, could stay mild on its own, plus jumping all over it with meds and scheduled checkups could alter trajectory. People with AI's can remain mild, is my point, and can reach normal life expectancy despite an AI. So please don't predict doom, it's premature to think that. Sending my best.

     
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    Old 02-16-2016, 04:41 PM   #11
    Ryaon23
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    Re: Do I have MCTD?

    From what I read chronic fatigue syndrome is a very common symptom along with arthritis so I just wanted to travel without having to deal with those kind of issues

     
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    Old 02-16-2016, 05:10 PM   #12
    VeeJ
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    Re: Do I have MCTD?

    And hopefully those issues, chronic fatigue and arthritis, won't bite you in the near future or ever. In your shoes, I'd just settle the concern about Plaquenil suppressing immune response (I don't think it can, but you need to hear that from a doctor).

    And if your doctor sees no problems, go, enjoy. I really hope you post to update us, that you went & had a great experience.

     
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