Newbie with MCTD

Hi, everyone!

I just joined yesterday and look forward to getting to know all of you.  I was diagnosed with Mixed Connective Tissue Disease three weeks ago.  I first noticed several lumps on my neck in Sept, didn't think anything about it.  In Nov I asked my husband "Feel my neck.  Can you feel those bumps there?"  He said, "Feel them? I can see them! You need to get that checked out."  I went to my PCP, who immediately turned grim, ordered bloodwork, told me I needed an excisional lymph node biopsy ASAP.  I was shocked!  He was so serious.  Told me he suspected Hodgkin's disease.  I was to see a surgeon the very next day.  The surgeon wanted to do the surgery the next day! but it was Thanksgiving so I had to wait until Monday.  All the doctors' urgency scared me to death.

The lymph node labs came back as "dermatopathic lymphadenopathy."  Since I had no skin problems, they didn't know what to do.  Eventually symptoms began to present that helped me finally get a diagnosis.  My arms and legs hurt.  I couldn't lift my arms past my shoulders.  I had terrible pain every morning.  My joints starting aching.  My energy level was almost to 0.  I had difficulty swallowing.  I developed a limp.  My PCP did more bloodwork.  He found my sed rate to be 65 and my ANA antibody level was 1:1280!!!  I was sent to a rheumatologist who looked at my lab work, examined me, and said I have MCTD.  He put me on 15 mg of prednisone, 400 mg of Plaquenil, and a calcium/D supplement.  He also insisted I get a flu shot before leaving his office that day.  Even though I was very scared about the prednisone, I was so relieved to finally know what I have.  Now I can deal with it.  Since Thanksgiving, everyone around me, including doctors, have been expecting lymphoma. 

The rheumatologist warned me about the prednisone weight gain and the moon face.  I felt vain caring about it so much, but I did.  He put me on a special diet like I'm sure many of you follow.  High protein, low carb, and no processed sugar.  The only sweet thing I can have is fresh fruit and only two servings of that each day.  It's been weird, but I've lost 7 lbs in 2 weeks.  My next appt is Feb 14.  I have no idea what his reaction will be.  Evidently I must have consumed a lot of sugar in my former life. :)

Sorry this is so long...thank you so much if you've read this far.

Heartsong

DX:  Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08

Meds:  Prednisone 15 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg,

Darvocet as needed for pain ( I take it maybe 3x/week) 

Welcome to the forum. You gave us a great discription of your symptoms and what you've been dealing with. That helps us to help you!

with that 15mg of prednisone you've been given, you might not get the moon face and major weight gain!!  Those come with higher doses of prednisone, like 20mg and higher.  Wouldn't that be great if you could bypass all that added strain and stress!  I hope the dose works perfectly for you.  The plaqunil will take a couple of months to kick in.  Just so you know.

I need to change my diet too. I have too many carbs in it and my weight loss program has stalled out!  So I'm going high protein too! 

I'm looking forward to getting to know you!

Ginny

thanks for the encouragement and advice, jules and redrose.

I am currently down to 9 mg of pred, maintaining my weight loss (it bottomed out at 14 pounds).  My husband and my mom think I shouldn't lose any more or I'll look sickly.   I'm just holding my breath knowing that it might not last.  I wasn't really overweight before, but now I feel better about how I look.  (I'm 43, so being 5'4" and 127 lbs feels really good for someone my age.) 

jules, my raynauds is really bad, too.  I'm curious how much warmer weather will affect it.  I'm not encouraged by how my fingers blanch when I enter a heavily air-conditioned room lately. 

I, too, have a space heater at work, in my classroom (I'm a teacher.)  My headmaster recently gave me permission to wear gloves while teaching.  It was funny.  I hadn't asked him for permission.  I just did it so I could cope.  I guess he knew I could reference a disability law if he didn't.

My biggest challenge now is getting back on the treadmill.  I was walking for 15 min (it's not much but it's all I could manage) every morning, but lately I've been SO TIRED and cranky.  I sleep as late as possible these days.  I'm looking forward to summer break like never before.

Post Edited (Heartsong) : 4/25/2008 3:53:45 PM (GMT-6)

See my post on the thread titled "new to the group" for the story of my case of mctd.

Raynauds is difficult particularly in the first year or so but it can get better.  There are meds you can take if it gets bad.  I have found that sitting inside in a cold room (actually does not have to be that cold) can be worse than being outside, dressed well in -10F temps.  My raynauds has gotten better over time but it still is annoying and my fingers are like ice sometimes.  Warmer weather will help but the first year I found that my fingers would turn purple while walking in 65 degree temps when the wind would blow and/or some clouds hid the sun.  Seems weird at first but you get used to it.  In general you will probably have to dress warmer and wear glove more than before.  Sitting and reading or watching tv can bring on raynauds as well.  You will learn to adjust your habits and dress to make yourself comfortable.

I returned to skiing last winter and was able to ski at -10F in 50 mph winds.  Was dressed in more layers than before getting sick and kept all but my thumbs warms so I could only ski about 45 mins at a time.

Raynauds can also affect other capillaries beside those in your fingers and hands so monitor your blood pressure carefully.  It is one of those secondary conditions that is usually just a nuisance but it can be more serious.

As for weight gain with prednisone many patients do not adjust their diets to it and gain weight.  I did not gain weight at all.  Too many do not understand that they  are more sedentary, might have lost muscle tissue as well, and continue to eat the same or even more than before.  It is not the prednisone it is their habits.  Avoid sweets and eat less carbs and you will be OK.  Pred does redistribute fat and that is how you get a moon face, hump back, and prednisone belly but those will go away as you taper down.  I had a round face and a belly even though I was not overweight but those are gone now.

Bill

And i was wondering if anyone could help me,

I'm 15 and underweight, i have all the characteristics of someone with MCTD

however, i dont understand what a few things mean;

Very high ANF titre,

Positive extractable nuclear antigens

positive anti-ro and RNP and ENA.

i've got an appointment on the 7th with the rheumatologist, but to be completley honest im scared, so i wanted to get a heads up on what hed say, umm i suffer from anaemia, raynauds, diffuse hair lose, weird colouring around my eyes and in general i am extremely pale, malaise depression and ect...

as you can tell ive been holding off the partying and having fun, ive been ill for almost a year now, and i just need some help.

THANKS.

i really appreciate it:)

What's the next step though?

The diagnosis has been changed continuously to CF, Rheumatoid arthiritis, lupus and such,

but if it is MCTD what does that actually limit?

i've tried to read up and understand as much as i could on the disease, but i only focused on the things that were negative, naturally.

How do people cope with it?

I'm sorry im so inquisitive but it concerns/worries me being ignorant to something like this.

Thank you for reading,

Louise x

P.s. i'd really appreciate it if someone who was diagnosed with it could get in touch, i'm really not sure how to ask, :)

You are young and have a good chance of leading a normal life but the disease must be diagnosed and controlled first.  If there are any secondary conditions these need to be controlled.  My advice is to take things a day at a time.  No one can predict how things are going to evolve but most cases are controlled and with proper care you should lead a normal and long life.  It does not help to worry about it or how it might evolve because you will drive yourself crazy. 

Define a new normal for yourself and lead the best and fullest life you can.  As you improve, define a new, new normal.

Just remember that auto immune diseases are different from others and very difficult to understand.  Every case is unique so there is no normal course of the disease.  Hope for a mild case but realize that for a time you might have less strength and energy.

Hope this makes sense to you.  I have come out of the deepest hole and life is good again.  Not the same but good nonetheless.

Bill