Mother with mctd

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Wm23
New Member


Date Joined Jul 2013
Total Posts : 2
   Posted 7/31/2013 7:48 AM (GMT -6)   
Hi everyone,
My mother was diagnosed with mctd last year. After she was diagnosed her rheumy put her on prednisone and plaquenil. She continued to have joint paint, and later developed a rash so the dr stopped the plaquenil and started cellcept. In the mean while the dr referred us to a dr in Georgetown hospital. That dr raised the dose of cellcept further to control the joint pain. That was three months ago. Right now my mom is weaker than ever, over the weekend she had to be hospitalized. She can't swallow properly, so she is getting nutrition through IV. The dr at Georgetown wants to try IVIG. I wanted to ask if anyone has any experience with IVIG. I love my mom very much and I really don't know what to do next. Someone please guide me.

Thank you

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/31/2013 5:49 PM (GMT -6)   
I'm sorry your mom is so sick. I don't know anything about MCTD.
It sounds like she's having a hard time with this flare. Maybe someone here with MTCD can talk more about this.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, 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 : 1342
   Posted 7/31/2013 8:40 PM (GMT -6)   
I have mctd and had an extreme and life threatening case which started in 2005.  Even though treated aggressively with pred for 6 months polymyositis hit me very hard, I lost 40 lbs of muscle in a week which gave me autoimmune hepatitis.  It left me quadriplegic and unable to swallow anything.  IVIG (5 day treatment) saved my life and aggressive PT/OT and speech therapies restored my function.  Today I am healthy and lead an active life after years of therapy and exercise.
 
MCTD is very rare and very complicated but if your mother's doctors recommend IVIG I would not hesitate.  It is often the only treatment that controls severe or resistant cases.  Pred and azathioprine kept my immune system in check after IVIG and I have been in full remission since Jan 2006 and off all controlling meds for 2 years. 
 
Most people in this forum are not familiar with IVIG or MCTD.  Severe cases of MCTD are usually known for lupus or polymyositis symptoms (I had both) and sometimes others (scleroderma, RA or dermatomyositis). 
 
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.

Wm23
New Member


Date Joined Jul 2013
Total Posts : 2
   Posted 8/2/2013 9:58 AM (GMT -6)   
Thank you for your kind words @couchtater
@bill. Thank you for your reply. My mom has dermatomyositis as well. She is currently in the icu on a ventilator. Her respiratory muscles are weak. The rheumatologist suggested she get IVIG but they mentioned that it is a 2 day treatment and she would need maintaince therapy every month. Also is there any way to email you or get in contact with you.

Thank you

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 8/2/2013 10:06 AM (GMT -6)   
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