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amo
Regular Member


Date Joined Sep 2008
Total Posts : 70
   Posted 3/21/2013 11:14 AM (GMT -6)   
I am new to this group, I usally am on GERD site. I have had chronic hip pain for 10 years. I started going to a RA doctor who would put deep cortisone shots in my hip for the pain. Then my ankles started hurting. The doctor did several blood test that all came back normal. Then he did a specialty blood test and said it was positive for mixed connective tissue disease. I have been on Planquil for 4 weeks and a rx antiflamitory. I look back and wonder if other things I have had were from the MCTD all along, like swollen ankle, GERD, depression. I would love to talk to Bill from the GERD group, I read that he has MCTD as well as GERD. I have read that esphogus difficulties can be caused by MCTD. I would also like to talk with others who have MCTD. So far I have days that I dont feel to bad and then some days I hurt and or I am so tired, after sleeping 10 hrs, I need a nap after being up a couple of hours!

NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 541
   Posted 3/21/2013 12:22 PM (GMT -6)   
Welcome to the group. I was diagnosed with MCTD in 2005. I have taken Plaquenil and MTX consistently since then. I also have like you extreme fatigue and pain in my joints. I have acid reflux a lot and also irritable bowel syndrome. This is a funny disease. I can have days when I feel well and other days I can't get out of bed. I have learned to listen to my body and make sure I get lots of rest. If I overdo it then I start flaring and it takes a long time for me to recover from flares.

Hopefully, Bill will come along and "talk" with you. He is very knowledgeable about MCTD and has a great story to tell about his own journey.

Take one day at a time.

Hugs,
Mary Ann

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/21/2013 4:01 PM (GMT -6)   
I don't have MCTD but I did have Gerd. I had the surgery 3 years ago to fix it. It rarely bothers me now.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1341
   Posted 3/21/2013 9:25 PM (GMT -6)   
What questions do you have about mctd? It is a complicated disease that affects each person uniquely. There is no standard presentation, progression or response to treatment.

Gerds is no big deal. I have Barretts esophagus and it has been treated successfully with proton pump inhibitors. Most likely, it was caused by PM which weakened the muscle on top of my stomach and caused acid reflux. Of course, the chonic condition is gerds and Barretts is the next step.

In short, my symptoms were severe and started with lupus but it was polymyositis that gave me my biggest problems. Despite the extreme nature of my case I recovered and have been in remission for 7 years. Much more to my story but as I said, each case is unique and most cases are not as dramatic as mine was.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

amo
Regular Member


Date Joined Sep 2008
Total Posts : 70
   Posted 3/22/2013 11:19 AM (GMT -6)   
Thank you for your response Mary Ann, I keep reading you need to go with what your body is telling you, but I feel like such a hypochondriac sometimes. I wonder to myself, is that pain MCTD, I am tired, is that MCTD?
I have also had the Nissen fundoplycation in 2006 and do not have anytrouble except I have a small tear in the fundo and no dysplasia barretts esophagus.Thank you Joy!
Thank you for responding Bill. I was just wondering when they found out my esophageal flap was not working in 2006, was that caused from the MCTD that I did not no I had? Do you take medicne now that you are in remission?
My husband tends to think it is in my head and I am always questioning myself. I was going to the pain doctor, which is a RA doctor because of tightening muscle in my hip and causes a lot of pain. He puts a deep cortisone shot in my hip which gives relief for a couple of months. The last time I went to him I told him that my ankles were hurtin. He did blood work and said I have MCTD and put me on Planquil. I have a lot of aches and pains but I still have a hard time thinking I have MCTD.
Thank you for responding and sharing.
Mechelle (amo)

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1341
   Posted 3/23/2013 8:47 PM (GMT -6)   
I have been in full remission for 7 years and not taken any controlling meds for over 3 years.  As for your husband thinking it is in your head....he would never say that to me!  My case was extreme and I almost didn't make it.  Lupus hit me very hard, scleroderma not much if at all, and polymyositis took 40 lbs of muscle in a week and almost did me in.  I started 2006 as a quadriplegic with a feeding tube and a long list of other complications and have recovered from that and lead an active life again.
 
Mctd is an overlap disease, different in every patient, and severity can range from almost no symptoms to life threatening.  I had a feeding tube for several months and could not swallow anything and it was due to polymyositis weakening the many small muscles used in swallowing.  For the most part, I now eat and drink normally thanks to aggressive speech therapy. 
 
You won't find much about mctd because it is a disease with many faces so there is not just one story to tell.  Plaquinel is a fairly moderate drug for mild cases and there are other more powerful drugs to treat it if necessary.  I was put on 60 mg of prednisone almost from the beginning and it took IVIG to save my life.  After that I took pred and Imuran to prevent flares but was able to taper to sub therapeutic doses about 5 years ago to reduce any side effects.
 
Bill

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 3/23/2013 9:15 PM (GMT -6)   
Bill - is a positive RNP ( I think that's the blood test) required for dx of MCTD? Or is it an accumulation of criteria like lupus etc. ?
Thanks - Lucy

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1341
   Posted 3/24/2013 6:44 AM (GMT -6)   
I think rnp should appear in labs for a confirming diagnosis but in my case it took several months to show up. Regardless, treatment is going to be the same and my docs started treatment several months before rnp showed up. Read through the following articles.

http://www.patient.co.uk/doctor/Mixed-Connective-Tissue-Disease.htm

http://www.medicinenet.com/mixed_connective_tissue_disease/article.htm

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

amo
Regular Member


Date Joined Sep 2008
Total Posts : 70
   Posted 3/24/2013 2:05 PM (GMT -6)   
Glad you came through all that Bill. Thank you for sharing your experiance.

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 3/25/2013 10:33 AM (GMT -6)   
Thank you, Bill. Those links were very helpful. As usual you are a wealth of good information!

Lucy
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