I have mctd and had an extreme case. It was resistant to prednisone and PM almost killed me. I lost 40 lbs of muscle mass in a week and started 2006 as a quadriplegic who could not swallow. It attacked my kidneys, gave me auto immune induced hepatitis and affected my entire digestive tract. That is the bad news.
The good news is that I survived and have recovered substantially. My story is a long one but one of hope. The most important thing is to get a definitive diagnosis and then start aggressive treatment. You cannot let fear of side effects stop you from getting treatment. What you have is potentially more dangerous than the meds.
You can search my posts for my full story. Do not hesitate to ask questions or email me if you do not want to post them on the forum.
By the way, I started playing golf again this year and hope to return to climbing and skiing later this year.
But you need to find an experienced doctor or clinic and start aggressive treatment. Prednisone is usually prescribed initially and then something else (like imuran or methotrexate) added so that you can taper off prednisone. I am down to only 6mg of pred and 100mg of imuran (expect to be on that indefinitely) and should be off pred entirely in a few more months. The worst side effect I had was hypertension which has been successfully treated and brought under control. Imuran might be affecting my blood but that is not for certain yet and my rheumy reduced the dose 2 months ago.
A few other notes: your swelling might be caused by proteinuria. Treating yourself for muscle and joint pains is only treating the symptoms....you need to treat the cause. Your depression is most likely a product of your fear. Act to find an experienced doctor and that will also improve.....there is life with mctd. Mctd is different in each patient so it is hard to predict what course it will take with you.....most do not have such an extreme case. I have raynauds which seems to be going away after 2 years and Barretts esophagus thanks to PM.
Sorry you have this awful disease but it can be controlled. By the way, I am almost 65 and intend to live at least another 30 years in good health.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone (7mg & tapering), 100mg 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