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Posted 2/24/2010 8:02 AM (GMT 0)
I've got the next Dr's appointment on the 3rd of march hopefully the last. But I am so scared. They are reluctant to give a diagnosis because of my age, at 16 not many people develop MCTD. One Dr has simply put it down to Sjorgens and although i understand why he may think that I do not have any of the supposed "Main" Symptoms. With my allergy to ibroprofen I can't ind any pain relief , is there any  over the counter alternative? I need to talk to people in the same boat because I am completley lost on how to fix myself. To any one who reads this, Please reply. I'm at the end of a year long marathon but i have no energy left for the final 100 m's. Thankyou for your time,

Louise

x

Posted 2/24/2010 1:24 PM (GMT 0)
Louise,

MCTD can hit at any age and one article on emedicine states that it is most common between the ages of 15-25.  I am at the other end of the age scale and it hit me at age 62 which is less common.

http://emedicine.medscape.com/article/335815-overview

Bill

Posted 3/1/2010 4:18 PM (GMT 0)

Hi there...I am the original poster for this thread two years ago.  I am sorry you are dealing with possible MCTD at your young age.  Prednisone helped me immediately.  My doctor also added two antimalarial drugs - Plaquenil and Quinacrine.  Not everyone is comfortable sharing their illness with family and friends, but I found that others were willing and eager to help with tasks and modifications that would benefit me.  At your age I would tell your teachers, your school administrators so they can help you should you have a really bad flare at school.  Your family hopefully will understand even better your increased need for rest.

As for talking with a doctor, keep a journal of all the symptoms you notice and let the doctor know about your pain level.  Mine was good about giving me a pain med to help, but I never take it unless I'm really hurting, but I'm grateful it's there when I need it.

It's hard when you're tired all the time, but do try to stay active.  The easiest way is walking.  Even if it's just for a few minutes each day.

Hope you're doing better.  I think you'll get many more responses with a new thread.  Good luck!

Posted 8/27/2015 1:27 AM (GMT 0)
Hi all, I've been in denial for more than a year but things are getting scary so I guess I'm finally seeking support. I can't believe that at 50 I feel 80. Two years ago I completed my 4th marathon and now I'm tired walking done the driveway to get the mail. I have MCTD that wasn't diagnosed for a year. They told me it was stress and I needed physical therapy. I went from taking no meds to 18 pills a day. It's prednisone, plaquenil and methotrexate are killing me. I wake up at night in a panic because I can't swallow and my heart is racing. I've gained 15 pounds and the roller coaster I'm on is killing me. I have two jobs, a wonderful son and loving husband who also works two jobs. I'm either 100 percent balls to the wall or in bed for the entire day in pain. My skin is thickening, hands are sore and the RA, PMR and Sclerdoma are kicking my butt. I've managed to taper from 40mg of prednisone to 5 mg this week but I'm so tired and sore. Will it ever get better? My son is only 14. Will I be here for him?
Posted 8/27/2015 5:15 AM (GMT 0)
Sounds like you need to pace yourself so you're not crashing so much. (No pun intended)

You need to focus on you, so you can be there for your family. Find ways to cut some of the pressures in your life. Rest when you need to. Some things can wait for another day.
Posted 8/29/2015 8:01 AM (GMT 0)
Struggle Bus:

It does sound like you need to pace yourself a lot better. These types of diseases can really drag us down. You and I are the same age and I understand that feeling of like your 80 instead of 50.

I noticed you said that, " It's prednisone, plaquenil and methotrexate are killing me." What exactly is it doing to you? I'm currently on those exact three medications and YES, I'll agree prednisone is a love/hate kinda drug. It helps us so much when we are flaring big time, but the side effects are killer on our bodies. I know that I've been on prednisone for 15 years now at high doses. I have severe osteoporosis to the point I break bones w/o even falling down anymore. Currently I'm walking around with a fractured pelvis, 5 fractured ribs 3 on the left side and 2 on my right.

I've gained and lost a bunch of weight with the prednisone. I have very thin skin, a hump on my back, horrid stretch marks, a terrible moon face, and I could continue on and on, but I won't. I can say this though w/o these medications I would probably already be laid to rest by now, if I'd not taken these medications.

I've been there where you feel like you can only stand up for a couple of seconds. How long have you been taking these medications? Some of them can take up to 6 months before you start feeling the effects from it. The weight gain is totally normal with prednisone. You need to watch what you eat and keep a journal on a day to day basis on your symptoms and how you are feeling.

Yes, lots of lupus patients get better with their treatments and time. Yes, you'll be there for your son. Slow down and take care of yourself and I promise you'll be around for your son and the rest of your family. If you keep going at the pace your are going at you'll only make yourself worse. Hang in there and let us know how you're doing.

Hugs,
Barbara
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