mctd Community Group

mixed connective tissue disease

78 Members
9 Posts
0 Online
Muscles & Bones
/ mctd Support Group

MCTD and Pulmonary Hypertension

gentlepup
gentlepup

hello everyone 


Im new to this group.  I was recently diagnosed with pulmonary hypertension due to MCTD.  I have had an unspecified Connective Tissue Disease for many years (I'm 45). About 4 months ago, I started having trouble breathing and had chest pain. I saw a cardiologist and then my rheumatologist.  Had a right heart cath and that showed mild pulmonary hypertension. But the symptoms don't seem mild to me, so I'm going to have a more thorough evaluation soon at a specialty clinic.  Anyone else here have a similar condition?  Any advice?


thanks

BeckyJoMcd
BeckyJoMcd
I was originally diagnosed with Sjogren's Syndrome some 23 years ago (at age 50), also diagnosed with pulmonary fibrosis which was treated aggressively, and has been in remission for the past 10 years. Two years ago I saw a new rheumy as my old one retired, and he reclassified my diagnosis as Mixed Connective Tissue Disease based on the lung disease, high RNP antibodies, Raynauds, etc.)-nothing changed as treatment is virtually the same for both.

I've been seeing a cardiologist for about 4 years as I had been having uncontrolled high blood pressure which has improved with new blood pressure medications. Last spring, the cardiologist repeated the echocardiogram that he had done 3 years earlier to monitor my heart. After that test, I learned that I have stage 1-2 diastolic congestive heart failure and pulmonary hypertension. Generally, this means that my heart muscle has stiffened (due to the connective tissue disease, pulmonary fibrosis & sleep apnea). That results in pulmonary hypertension due to a large amount of blood accumulating until the heart muscle catches up and then pushes an excess amount of blood to my lungs.. For additional information about pulmonary hypertension see: http://www.heart.org/HEARTORG/Conditions/HighBloodPressure/AboutHighBloodPressure/What-is-Pulmonary-Hypertension_UCM_301792_Article.jsp#.WizfJXlrxHA.

You may want to ask your doctor for a referral to see a pulmonologist (lung specialist) who can run additional tests to determine if you have other undiagnosed lung conditions (which can be part of mixed connective tissue disease).

Please keep us updated with the results of your visit with the specialist.