Thanks to both of you for responding, Bill can you tell me did you ever have Raynaud's (sp) I don't have it and everything I have read said that is one of the first indicators. I am also wondering if you can tell me if you have had any gladular problems? I am suffering from strange sort of sensations in my paratoid gland in front of my earlobe. But seem to have all the symptoms of Lupus and none of MCTD but yet this anti-rnp they are telling me is only seen in MCTD.
I am confused.
MCTD is a combination of lupus, scleroderma and polymyositis. You can have symptoms of any one of them, 2 of them, or all 3. I was first diagnosed with lupus which was correct but I had more and 2 months later I was diagnosed with mctd.
My initial symptoms were swelling in both feet/ankles which spread to my legs and later my hands and arms. Also joint pain. I had proteinuria (kidneys filtering out proteins) which cause very severe edema. All my joints were inflammed and painful and eventually I exhibited muscle weakness. about 5 months after the intial flare I had raynauds and still have it although it has improved. My entire digestive tract was affected and I had auto immune induced hepatitis. In short I was a mess.
Most cases are not as extreme. MCTD will usually present symptoms of one of the three diseases and then morph in some way. Lupus has been called the disease with a 1000 faces and mctd must be the disease with 10000. It is highly variable and difficult to diagnose and treat in some cases.
Raynauds is a secondary condition but can be present with lupus, scleroderma or mctd. Very common.
Anti rnp antibodies are required for an mctd diagnosis. U1-70kd antibodies are usually present. Here is a link that might help to answer some questions you have.
If you are looking for black and white answers you will not find them. MCTD is a rare, little understood disease that is highly variable. The good news is that most cases, once diagnosed, can be successfully treated. Even though mine was very extreme I have recovered well and have not have a flare. My problem is that PM took 40lbs of muscle mass from me in a week and left me a quadriplegic who could not swallow. That is all past and I have resumed a somewhat normal life...playing golf, working out, hiking and skiing again next month. I am not anywhere near my previous fitness level but life is good....just different. My story has been told many times on this forum and on www.myositis.org
. I would bet that you will not have the same experience that I did.
All of the above said...there is no definite pattern to mctd. Treatment is pretty much the same but some cases are resistent to prednisone. Mine was and probably due to scleroderma or lupus attacking my GI tract....meds were not being absorbed properly. I had to have gamma globulin (ivig) to save my life.
You will need to learn to be patient with this disease and you will not always get definitive answers. Ask more questions if you have them and feel free to email me if necessary.
This is a scary situation but you need to focus on diagnosis and treatment now. If you are unsure of the doctor's diagnosis, find an experienced rheumatologist and get a second opinion. You might consider going to a clinic like Mayos or the new myositis clinic at John Hopkins. If you are Canadian, I don't know where to send you but there are other Canadians on the other site.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it." Helen Keller