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Living With Fibromyalgia - Online Support Group

A much needed update

#1

Hi all, I figured I’d post an update. It took me a while to get access to the new site but I’m here finally. A lot has happened in a few short months.

As some may know, I was diagnosed with autoimmune hepatitis (AIH) 5 years ago. It’s also known as lupus of the liver. It occurs when the body randomly decides to reject its own liver. It’s not a form of hepatitis caused by drugs, alcohol or a virus. It’s an autoimmune disease and is treated similarly to lupus.

At first the doctors thought my widespread pain was because of the liver disease, then they thought it was fibromyalgia. Tests ultimately revealed I have small fiber neuropathy and an inflammatory arthritis. My doctors thought the arthritis was lupus because it is very systemic. It affects my brain, heart, eyes and other organs. But they’ve finally settled on calling it juvenile rheumatoid arthritis as of two weeks ago. This was a bit of a shocker because I’m close to 30. But my rheumatologist said it’s because my symptoms started when I was a kid.

The meds stopped working for my AIH and I’ve been really sick for the past year. The only other conventional treatment option is to begin to treat me with transplant medications. My liver dr doesn’t think I’ll be a good candidate due to the neuropathy and headache side effects which I already deal with. We are now going to try to treat this with meds for JRA. My liver doctor says it has been done in Germany.

My rheumatologist says the goal is to improve my quality of life and my liver tests. There are about a half dozen meds we can try for this. He thinks the chances that I’ll actually get better are around 20%. As soon as my insurance company gets its act together I’ll start Humira injections. If that doesn’t work I’ll move on to another biologic.

#2

Hello E1989,
Thanks for the update. Sounds like you are dealing with a lot; at least you seem to be getting some answers. I wish you well.
Take care, Anne