Mixed Connective Tissue Disorder

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New Member

Date Joined May 2007
Total Posts : 3
   Posted 5/9/2007 1:01 PM (GMT -6)   
sad  Just diagnosed with MCTD after being misdiagnosed for more years than I can keep track of. Just moved into a new house and the fatigue and pain are doing a number on me. Just wanted to say hi and hope you are all doing as well as you can be, given the medical circumstances. Elyse aka keesakitty

Veteran Member

Date Joined Jan 2004
Total Posts : 4151
   Posted 5/9/2007 1:04 PM (GMT -6)   
Welcome Elyse... I'm sorry that you are having to deal with this and that you are suffering. Please know that this is a great bunch of people and the support is wonderful. I'm glad you joined! :-)
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Xanax XR 2mg, Miralax 17g, Supplements


Regular Member

Date Joined Jan 2007
Total Posts : 279
   Posted 5/9/2007 4:08 PM (GMT -6)   
Hi Elyse,

Welcome! This is a great site. The people here are fantastically supportive. Sorry, though, that you are ill.

I have MCTD also. My pain and fatigue is somewhat under control now after having been on Imuran and prednisone since Sept. I am much better off than a year ago (though still so far from "normal"). Several folks around here have MCTD so ask questions or tell your story. We're all interested and want to be helpful.

Stay Strong,
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Prozac (off now)

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 5/9/2007 4:09 PM (GMT -6)   
Hi keesakitty and welcome. I think a lot of people here will be able to relate to the many frustrating years it can take to get a diagnosis. I'm sorry that you are having a flare up of symptoms - I imagine all of the stress of moving has taken its toll on your body.

Like Des said, we have a very supportive group of people here. Feel free to ask any questions and also know that you can vent anytime you are having a bad day.

Take care and I look forward to hearing more from you.
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; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 5/9/2007 6:04 PM (GMT -6)   
Hi elyse I hope you are enjoying your new house. It took me 13 years to get any help and I was so so sick. Still am. They are still working on me. Anyway, at least you have a diagnosis now and hopefully they can get you some treatment to make you feel better. I hope you can get a chance to put your feet up and rest and delegate some of the moving and unpacking to others. The people here are really great and will really help you alot, I'm sure, as they've helped me. I hope you feel better.

"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek--I'm not a trekkie but this one was funny!

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 5/9/2007 6:11 PM (GMT -6)   

Hi Elyse,

   Another welcome to you. I'm sorry your having a rough time right now. I hope you will be able to get some much needed rest since you have moved. Hope to hear more from you soon. Take care and rest! You will be in my prayers.


 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Veteran Member

Date Joined Jan 2007
Total Posts : 610
   Posted 5/9/2007 7:53 PM (GMT -6)   
Welcome to the forum.  I used to have MCTD, but now is SLE.  Take a good rest and hope to see you more often here.

Regular Member

Date Joined Aug 2006
Total Posts : 50
   Posted 5/9/2007 7:59 PM (GMT -6)   
Welcome... I have MCTD. My knowledge about it is limited... it's so confusing to me. I just take my medicine and go on with life as much as I can. I've realized the doctors don't know much about these auto-immune type diseases either.

Dx; MCTD or Lupus Overlap? - RA 11/03, Polymyositis 10/04.
Rx; Prednisone 5 mgs, Methotrexate Injections.

"For I know the plans I have for you", says the Lord. "They are plans for good and not for disaster, to give you a future and a hope"....Jeremiah 29:11

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 5/9/2007 9:45 PM (GMT -6)   
Hi Elysa:

Just another welcome coming your way. I hope that you begin to start to feel better. Looking forward to getting to know you better.

Take Care,
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 5/9/2007 10:27 PM (GMT -6)   
MCTD is SLE, scleroderma and polymyositis.  It can be the disease with 10000 faces and manifests itself differently in each case and can display different symptoms over time.  My first symptoms were those of SLE but PM took over.  Scleroderma was the least of my problems and continues to be so.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.
Meds: prednisone (9mg & tapering), 150mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, 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 Member

Date Joined May 2007
Total Posts : 3
   Posted 5/9/2007 10:59 PM (GMT -6)   
Thanks for the welcome everyone. I have been disabled for 16 1/2 years with a primary immune deficiency, hypogammaglobulinemia(B cell deficiency). It gives me fevers that last for months, chronic fatigue, frequent infections, migraines, skin disorders, etc. Its incurable and I cant take gamma globulin due to severe allergies and asthma. I cant tolerate the gamma as it is made from other human donors. I've been on and off steroids since I was 19. Last year I developed almost all the symptoms of long term steroid use- hypertension, kidney disease, cataracts, diabetes- all within 3 months. Well I cried a bit, got depressed, hit the gym, lost some weight and was dealing with the latest health slump. 3 weeks ago they found lesions in my lungs, plantar fasciitis, tarsal tunnel syndrome, carpal tunnel, a nerve disorder in both hands and antibodies for MCTD. I had JRA as a child and have had these systemic arthritic flareups since I was 12. Turns out it was probally MCTD for years. So now the disease has a name. I feel like I have subscribed to the disease of the week club and I want very much to terminate my membership! LOL! I'm now on so many meds, Walgreens has me on speed dial. On the brighter side, I finished unpacking the living room and the office. Now I have the rest of the house to go. about 200 boxes or so remain. Blehhhhhhhhhhh! Elyse aka keesakitty

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 5/10/2007 12:22 AM (GMT -6)   

I'm so glad that you found us. You have had a long hard road to travel with all your health problems. I hope you find this forum to be as helpful as I do. It's somewhere you can go at any time to vent, complain, whine, or talk about any emotions you have, with people who really understand what you're going through and won't tire of your venting. And I have gained so much useful information here as well. Of course a huge benefit is making friends with so many kind and empathetic people who all support each other. I hope you'll take care of yourself while unpacking those additional 200 boxes, and also that you'll find the time to come back and join us again.

Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

New Member

Date Joined Jul 2010
Total Posts : 1
   Posted 7/15/2010 2:40 AM (GMT -6)   
My 11 year old daughter was diagnosed in Janurary 2010 with MCTD. We have been up and down and trying all different kinds of medication. She has went through Physical therapy and Occupational therapy. She is doing better but still has a lot of cramps and can not take tylenol, ibprofen, or asprin. It is really hard for her. I am glad that I have found this website it has given me a lot of info. Thank you

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 7/15/2010 11:29 AM (GMT -6)   
Hi Elyse and welcome. This is a wonderful group of people. Glad you found your way to this board!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

Regular Member

Date Joined Aug 2010
Total Posts : 124
   Posted 8/16/2010 10:44 PM (GMT -6)   
What does positive ANA 1:80 (twice) then 1:160 and optic neuritis equal? Any ideas out there? Anyone understand this?  Why do I feel so much worse?

Regular Member

Date Joined Feb 2010
Total Posts : 138
   Posted 8/17/2010 6:10 PM (GMT -6)   
Hi Elyse welcome. I'm pretty new to this site also. I don't always find time to be here but I love it here when I can get here. There is soooooo much info and lot's of nice people. Wish I could come help you unpack (((HUGS)))
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