New to the group

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Apr 2008
Total Posts : 1
   Posted 4/25/2008 9:56 PM (GMT -6)   
I justed wanted to say "hi" to everyone is this group. If feels good to have some comrades who know what it is like on a day to day basis. I just was recently diagnosed with MCTD after 2 weeks of excruciating pain in my toes, foot, and ankle. I was misdiagnosed a week ago with gout by my PCP. I am currently taking prednisone and I am hoping it works. I was diagnosed 6yrs ago with anti phospholipid antibody syndrome. I have had several m/c (s) and a stillbirth. During this time I also had two pulmonary embolisms. I am taking Lovenox and baby aspirin for the APS. If anyone has any info or websites I can get more info about MCTD I would appreciate this. Though I am only 29 and I have all these issues not knowing what tomorrow may bring, I try to remain upbeat, though some days are very difficult. Thanks for your help.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 4/25/2008 10:34 PM (GMT -6)   
Hi Red!!

Welcome to the forum!! ((((((((( Red )))))))) hugs for you sis! You've found a great place to share and vent. I especially feel for our young members who have so many health issues. Sorry you are having so much trouble. I think you will find some good friends here and there are two other new members with MCTD and a couple of veteran members too . . . so, hopefully you will be able to chat.

I'm glad you have finally been accurately dx'd so you can find a good treatment plan.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 4/26/2008 1:02 PM (GMT -6)   
Hi Little red and welcome. Like Rosie said, we have several people here with MCTD. A lot of these connective tissue diseases are very closely related and treated similarly, so even though some of us have differenct diagnoses, we all share a lot of similarities.

I am hoping that by getting an accurate diagnosis and by getting on the right meds, you'll get some relief. Feel free to ask any questions you have and also know that we are here for you if you are going through a rough time.

Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



Please allow HealingWell to continue helping others by donating:


Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Apr 2006
Total Posts : 1296
   Posted 4/26/2008 1:55 PM (GMT -6)   
I have mctd and had a very extreme case.  Most cases are more progressive and milder than mine but every case is different and presents a different set of symptoms and severity. 
My case started just like yours with what seemed to be a gout attack.  Withing 2 days it had spread to both big toes, feet, and ankles.  Gout is typically not symmetrical and it was obvious that I had something else.  I had a tenative diagnosis of lupus 2 months before by a hematologist (my platelets had dropped and I had mild anemia) and that was confirmed a month after the first flare.  The swelling, redness and pain spread to my legs and then shoulders and arms.  All of my joints seemed to be under attack at the same time.  2 short treatments of prednisone only temporarily alleviated things.
After 3 months and continuing deterioration (swelling, weakness, pain, fatigue) my doctors admitted me to the hospital for more tests.  MCTD was diagnosed at that time and I was treated with 60mg of prednisone.  My condition stabilized but did not get worse for another 2 months.  I was exhibiting symptoms of lupus and polymyositis but did not seem to have any of scleroderma, the third disease in mctd.  Then PM hit me like a freight train and I lost 40 lbs of muscle in a week.  It left me totally crippled, a quadriplegic, and I could not swallow.  My case was resistant to prednisone and it took ivig to save my life.  Other meds are too slow acting and my liver was being overwhelmed by the muscle breakdown.  I was near death but the ivig treatments worked although the damage to my body was extensive.  My docs kept me on pred and also put me on imuran at that time.  MCTD hit my muscles, kidneys (proteinuria), liver (auto immune induced hepatitis), joints, and entire GI tract.
In Jan 2006 I entered a rehab hospital and spent several months as an in and out patient.  AFter 5 weeks I was able to walk and go home but I was very weak and it took 3 months of speech therapy before I got my feeding tube pulled.  I have continued to work out on my own the past 2 years and have returned to golf, tai chi, skiing, and other things.  Not sure if I will ever be 100% again but life is good again and I can enjoy many of the activities I did before with some restrictions.
I know that my story will probably upset you but it is unique both in the severity and the recovery I have made.  Aggressive treatment is important and if you feel yourself getting weaker or having difficulty getting in and out of chairs or going up stairs do not ignore those symptoms.  Until you get it under control you should have blood tests including CPK and SED (ESR) every 2 months or so to monitor your condition.
What dose of pred are you taking?  Are you taking any other controlling meds like imuran or methotrexate?  Typically, experienced docs put patients on something like that so that prednisone can be tapered over time...sometimes, a year even several years.  Immuno suppressants like those are usually better tolerated for long term use than pred although some patients require more than one med to control their immune system.  Every patient responds differently to treatment so each of us is a medical experiment.  It is important to find a doctor who has experience treating lupus, myositis, and other connective tissue diseases.  Most doctors don't have a clue including many rheumatologists.  The disease is just too rare.
Let me know if you have more questions.  MCTD is very rare and very complicated and is different in each case.  Don't assume you will have anything like what I have experienced but it is a possiblity.  Since getting things under control I have not had a single flare and my challenges have been to recover from the damage done mainly by polymyositis.  There is much more to my story but it would take hours to tell so I have only hit the highlights....or low lights.
Hang in there and if you are not satisfied get a second opinion.  Teaching hospitals are best that have good rheumatology departments.  Not sure where you live but Northwestern U, Mayos, Johns Hopkins (they have a myositis clinic), Cleveland clinic are some of the good ones.  There are several in the west and on the west coast as well.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller

Regular Member

Date Joined Feb 2008
Total Posts : 42
   Posted 4/28/2008 11:37 AM (GMT -6)   


I have MCTD, too.  My story is in the "Newbie with MCTD" thread.  You and I were lucky to get diagnosed so quickly.  Hang in there.  I think we're in for a long journey, but it's not uncharted territory for the people on this forum.  I've found their experiences give me great insight.

Do you ever feel like people think there's nothing wrong with you because MCTD is not a disease that people recognize?  In my case, everyone was very concerned when I was being tested for lymphoma, but as soon as cancer was eliminated as a possibility and MCTD was dx' ed, it seemed like people thought I should be fine now.  I sometimes feel like saying, "I'm still as sick as I ever was.  It's just not easily explained."  That's my whine for the day.

43 year old female
DX:  Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08
Meds:  Prednisone 9 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg, 81 mg aspirin, ibuprofen and Darvocet as needed for pain ( I take it maybe 3x/week) 

Veteran Member

Date Joined Apr 2006
Total Posts : 1296
   Posted 4/28/2008 2:43 PM (GMT -6)   
We have all experienced that.  99.9% of the population has never even heard of mctd and has no idea.  Even when people saw me as a quadriplegic it did not register with most of them just how bad it can be. 
Here you will find others who understand.  Also try the PM/DM forums at  There are many there who also have mctd and it is more focused on the muscle disease which is often the most debilitating part of mctd.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, October 23, 2016 1:14 PM (GMT -6)
There are a total of 2,710,588 posts in 298,910 threads.
View Active Threads

Who's Online
This forum has 153464 registered members. Please welcome our newest member, jidhfiwa.
277 Guest(s), 16 Registered Member(s) are currently online.  Details
ilovebostons, 81GyGuy, 1000Daisies, VLou*, robby vieira, April_Ryan, Lynnwood, ks1905, PA_grandma, saozemko, poohcheez, Snokrystal, alexandann, Sonny3, Sissy63, minnietoty

Follow on Facebook  Follow on Twitter  Follow on Pinterest

©1996-2016 LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer