Hi - my first post
Hi, this looks like a great forum. I was dx'ed in 1999 with SLE. It took a while, but I have always been an athlete, starting to compete in equestrian competitions before I was old enough to remember (like 2), and I knew when my body was failing me.
In 2000 I got my dream job and moved to a big city. I was in agony - constant pain and headaches. I was only on plaquenil which helped my skin. I got a new rheumatologist and he put me on prednisone. By 2004, I was on 40mg a day. In 2001 I got an acute case of lyme disease which sent my lupus labs off the charts. I thought I was going to die.
In 2003 I was dx'ed with gastroparesis after 2 years of throwing up almost everyday - my stomach just wouldn't keep food down. I always felt full. Food just sat in my stomach. I also was hospitalized with pancreatitis for a week. When I got out, I noticed weird new symptoms like hard skin on my fingers that hurt and a burning rash on my eyelids. In 2004 I was dx'ed with dermatomyositis. I had to stop work. I was so sick I still don't know how I did it. Must have been the steroids, but osteoporosis put an end to steroids and I had to switch to Cellcept and methotrexate. I got a compression fracture in my lower spine in 2004 after just tripping (I was 34).
I still hope to get into remission. Now that I have battled my way through the disability process and finally won, I just have the bills to repay and to try to get better.
I would love to talk to other people who have overlap auto immune diseases like me. I get so frustrated with the meds and having to change my treatment almost monthly since my more prevalent symptoms of different diseases change all the time.
Thanks for your help in advance,
Welcome... I have overlap too, I was diagnosed in 2003 with RA then in 2004 I landed in the hospital for 8 days due to muscle weakness and a CPK (i think that's what it's called, liver enzymes) level that was off the charts. I thought I was dying too, I was in so much pain. My muscles broke down to nothing. I could not use my arms or legs, I had to go through physical therapy and have a home nurse for a while. I was on 60mgs of Prednisone and have since tapered off. Right now I'm only taking methotrexate injections. My diagnosis is mixed connective tissue disease which includes lupus, ra and polymyositis. I'm glad you joined, you will get a lot of info and there are a lot of nice people here that are so supportive. God bless...
I just wanted to post a quick welcome to you today. It sounds like you have really "been through the mill", with this disease. You must be a very strong person to endure such challenges in your life. I hope that finding this support forum will somehow enhance your spirit in a positive way. There are lots of individuals here who travel the same road as yourself and can understand your journey from a "grass roots" perspective.
Take care of you, keep the faith and keep posting as I look forward to knowing you better.
Welcome try2smile and fellow northern virginian! You will find some wonderful people here on this site. Everyone is so supportive! :D
Many people have lupus with overlap diseases. The most common overlap connective tissue diseases are: rheumatoid arthritis (RA), systemic lupus erythematosus (SLE or lupus), polymyositis-dermatomyositis (PM-DM), Systemic sclerosis (SSc or scleroderma), Sjogren's syndrome (SS), various forms of vasculitis.
Many people with lupus also have symptoms characteristic of one or more of the other connective tissue diseases. In polymyositis and/or dermatomyositis, the primary problem is muscle weakness due to muscle inflammation.
Weakness especially affects:
- the hips (inability to rise from a chair or toilet seat, or to climb stairs unassisted)
- the shoulders (inability to lift a weight onto a high shelf or comb one's hair).
- typically, there is little or no pain associated with the weakness.
People with myositis also have:
- increased blood levels of creatine kinase (CK), a substance that leaks from injured muscle
- abnormal electrical activity of muscles detected by electromyogram (EMG)
- muscle biopsy showing muscle cell degeneration and inflammation that is found in a muscle biopsy.
Treatment for Lupus in overlap with myositis (polymyositis-dermatomyositis) usually consists of:
Prednisone or other cortisone-like drugs are most often recommended for the treatment of myositis, and may be used in combination with other immune-suppressing drugs. Cortisone itself, in high doses, may actually cause muscle weakness of the hips and shoulders, very similar to what occurs in myositis. But in this condition, called "steroid myopathy," the CK, EMG, and the muscle biopsy do not suggest inflammation, and recovery of strength promptly follows reduction of the cortisone dose.
I hope this has been helpful, let me know if you need anything further
Peace and Blessings