Patient Comments: Mixed Connective Tissue Disease - Experience

Question:

Please describe your experience with MCTD. Submit Your Comment

Comment from: AngelShell, 45-54 Female (Patient) Published: February 14

I was diagnosed with Sjogren’s syndrome in 2011, and MCTD (mixed connective tissue disease) in 2015, after being made to feel like a hypochondriac for years. I had an all over body and scalp rash in 2016 that wouldn’t go. I carried on working through all the symptoms until recently. I’ve now been off work for nearly 2 months with debilitating muscle weakness, fatigue, all over body pain, brain fog, and abdominal and flank pain. Some days I am bedridden and can’t cope with how bad I feel inside and out. This is truly a terrible disease when it flares.

Comment from: Suzane, 65-74 Female (Patient) Published: June 19

I was just diagnosed with MCTD (mixed connective tissue disease). I went into sepsis shock 3.5 years ago that has changed my life. Finally the doctor found the source of the infection after sepsis. I have severe muscle and nerve pain. My left side limbs are a 10 on pain and the right side a 6 to 7. My left foot hurts with chronic pain and I have flare ups that debilitate me. I haven't started any medication as of yet. My lungs are scarred, I have heart problems, frequent urinary tract and yeast infections, blood pressure goes up and down, and temperature same problem.

Comment from: BlueEyedBayFilly, 55-64 Female (Patient) Published: April 11

I was diagnosed a year ago with MCTD (mixed connective tissue disease). At first the leg pain was mild, and I told my physician about it. Nothing was done. By the second appointment it was even worse. By the 3rd appointment it hurt so bad at night he looked at me like a bell went off and he did bloodwork. I had MCTD but tested again in 6 months which came positive again for MCTD. My legs, hips and feet hurt so badly at night I stopped doing anything during the day. If I didn't do anything my legs didn't hurt anymore.

Comment from: giananijulz, 35-44 Female (Patient) Published: July 03

I have been diagnosed with MCTD (mixed connective tissue disease) last week. I have been suffering from muscle pain, lower extremity edema and shortness of breath for about 3 months now. I am not on any medicines right now but in agony and my quality of life is not looking up, no one should live like this but there’s hope. I have MCTD, MCTD doesn’t have me!

Comment from: CBD believer, 45-54 Female (Patient) Published: June 27

I was diagnosed with MCTD (mixed connective tissue disease) in May 2017. The pain in my joints started in August 2016. I am an athlete and have 3 ACL (anterior cruciate ligament) surgeries on both knees and I thought the pain was related to the surgeries so I went to two orthopedic surgeons who both said I have some osteoarthritis but too soon for replacements as I was 48 at the time. Then the pain moved from my knee to my hips and then to my shoulders. By October I was taking 12 ibuprofen per day to keep the pain at bay and still do my job (physical education teacher). I was getting depressed and needed answers. My doctor did some bloodwork and said I should see a rheumatologist which took until May to get in to see when I was diagnosed with MCTD. I was desperate to try anything and I'm so glad I did. I was able to replace the 12 IBU's with 1 cbd capsule at night and I have not had a flare since I started. It took effect within the first week. It has strong anti-inflammatory affects and has drastically improved my quality of life.

Comment from: TANIA, 25-34 Female (Patient) Published: July 13

I have been suffering from MCTD (mixed connective tissue disease) with Raynaud’s phenomenon since last 2 months. The doctor gives me corticosteroid, HCQS (hydroxychloroquine sulfate), and Bosentas. I wonder if this is curable or not.

Comment from: Denverdoll, 45-54 Female (Patient) Published: June 11

I have had MCTD (mixed connective tissue disease) for years. I had it as a child and I was not even first diagnosed with it until just last month. I was discriminated against because of my age and was misdiagnosed for years as a mystery illness. One doctor said serum negative rheumatoid arthritis, and another that it is all in my head and I need therapy. I am unable to walk during my flares and have had blackouts twice now and on prednisone and Plaquenil and taken off methotrexate. I have been on methotrexate since 2012 and every biological drug and pill and suffered severe allergic reaction and anaphylaxis as I am allergic to the preservatives and sugar protein in them. I currently finally found a rheumatologist who finally diagnosed me with MCTD, and I also have myositis and ankylosing spondylitis as well. I cannot go outdoors in the sun without looking like a burn victim. I look like I have been burned severely and I refrain from going outdoors as much as possible and use sunscreen of 50 plus. I hate what this has done to my life. We need more research! I am getting worse very fast and unable to taper off my prednisone without severe relapse and inability to function.

Comment from: alison, 45-54 Female (Patient) Published: July 26

I have mixed connective tissue disease (MCTD)/lupus. I have been ill with this for around 18 months now. I was in agony with the pain in my back and wrists; this is a horrible disease. I am on hydroxychloroquine which I have been taking for several months now but it does not seem to be working.

QUESTION

The term arthritis refers to stiffness in the joints. See Answer
Comment from: CaroBev, 65-74 Female (Patient) Published: March 14

I was diagnosed with mixed connective tissue disease (MCTD) in early January of 2017. It is a very painful disease with multi symptoms not to exclude severe depression at times. Prednisone does help with my painful joints, but what gets to me the most is the weakness and the shortness of breath. On the 16th of March I will see a specialist to have an inhibitor like methotrexate or a biologic drug to stop the unrelenting progress of the disease before my own immune system has the chance to attack my lungs and finally my heart; end of story if it does.

Comment from: TimD, Male (Patient) Published: December 21

I was diagnosed with MCTD (mixed connective tissue disease) on March 30, 2015, by an ANA blood test. I have Sjogren’s syndrome as it gives me dry eyes and dry mouth; Raynaud’s phenomenon as it gives me numbness and blue/purple fingers. I also have rheumatoid arthritis (RA) which gives me soreness and stiffness in neck, fingers, and toes. I also have herniated discs at C5-C7 and the RA seems to attack that weakness as well. I was taking steroids and methotrexate for 15 months and felt great, but in June 2016 starting feeling like medicines were not working. I came off steroids and started Lyrica along with methotrexate. In November I developed pneumonia and then sinusitis. This disease is very frustrating as it keeps morphing and the medicines lower you immune system so you have serious problems.

Comment from: Chuipoo, 55-64 Female (Patient) Published: June 19

It is still early since diagnosis mixed connective tissue disease (MCTD). I am scared and lost. I am on short term disability from job right now. I am wondering on what to do next.

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Arthritis: 16 Bad Habits That Cause Joint Pain See Slideshow
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