MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
Hi all,
I was dx'ed with MCTD 5 years ago due to a positive ANA test and some other test. At the time I didnt think much of it because I had never heard of it and I figured they were just not sure what I had so they just made something up. I was on Prednisone for awhile and my new doc took me off of it cuz he said it is bad for me.
Now I am being tested for MS on Tuesday, having the MS protocol MRI's. I have almost all the symptoms of MS. As you know it is also another immune problem. I had Epstein Barr 7 years ago and that is what caused all this misery. Docs said it was the worst EBV they had ever seen. They practically promised me that I would be getting all kinds of immune disorders.
Well to date I have the MCTD, chronic Cytomegalovirus, Lotsa chronic Herpes viruses, Reynauds, Sjogrens, IBS, and I get tested every 4 months for RA because I am at 20 something and I have to have 30 to be dx'ed.
Anyway, I just started taking my prednisone tonight. I am self medicating. It really helped me before and I am so tired of the fatigue. Spent almost 2 weeks in bed already.
So, now that the quick story of my sick life is yours. Here is my question: What exactly should I be taking with MCTD? My new doc does not even know I have it because I forgot about it when I filled out the papers. Like I said I thought it was no big deal....boy was I ever wrong!!! This stuff is more serious than MS!!! Would anyone mind sharing some of their better meds experiences with me? I would really appreciate it!!! BTW....I am not a newbie, I came on here recently for the MS board and discovered that you guys were listed in my support groups. My memory is completley gone so I could not say when I visited last.....good to be back among friends though!!!.......Irish
I was dx'ed with MCTD 5 years ago due to a positive ANA test and some other test. At the time I didnt think much of it because I had never heard of it and I figured they were just not sure what I had so they just made something up. I was on Prednisone for awhile and my new doc took me off of it cuz he said it is bad for me.
Now I am being tested for MS on Tuesday, having the MS protocol MRI's. I have almost all the symptoms of MS. As you know it is also another immune problem. I had Epstein Barr 7 years ago and that is what caused all this misery. Docs said it was the worst EBV they had ever seen. They practically promised me that I would be getting all kinds of immune disorders.
Well to date I have the MCTD, chronic Cytomegalovirus, Lotsa chronic Herpes viruses, Reynauds, Sjogrens, IBS, and I get tested every 4 months for RA because I am at 20 something and I have to have 30 to be dx'ed.
Anyway, I just started taking my prednisone tonight. I am self medicating. It really helped me before and I am so tired of the fatigue. Spent almost 2 weeks in bed already.
So, now that the quick story of my sick life is yours. Here is my question: What exactly should I be taking with MCTD? My new doc does not even know I have it because I forgot about it when I filled out the papers. Like I said I thought it was no big deal....boy was I ever wrong!!! This stuff is more serious than MS!!! Would anyone mind sharing some of their better meds experiences with me? I would really appreciate it!!! BTW....I am not a newbie, I came on here recently for the MS board and discovered that you guys were listed in my support groups. My memory is completley gone so I could not say when I visited last.....good to be back among friends though!!!.......Irish
-kate
I started at 80 for several months, felt great for maybe 3 weeks or so. Then started having problems. Your body makes hormones so while your taking them it quits making them and is sluggish to start shop back up. I have been up and down now almost a 10 months. Dropping dosage from 80 to 60 cause a horrible flare, and dropping a dose from 10 to 5 did also. Please let them handle the drugs.
Just a caring red neck
Robert
Mary Ann
Mary Ann
I been told that it can harden your bones. I just saw my lung doctor and he ask me how I felt did I have problems stopping off this newest higher strenght.
I had a pack go home with me that took me off of it.
So I would say becareful......you can't just stop taking Prednisone....
that is all.
bee
B