Amyloidosis
Amyloidosis is another long-term dialysis problem that can affect your bones, joints, and tendons.
In your body, protein helps form muscle, bones, hair, and nails. Not all protein is good, though. One type of protein your body makes is called beta-2-microglobulin (β2m). Healthy kidneys remove β2m—which is a middle molecule and a toxin. In 1985, researchers found that β2m molecules left in the body link up and form long chains of amyloid, a hard, waxy substance.
Amyloid deposits can form all over the body. They tend to settle in joints, bones, and tendons where they harm tissue and cause pain. This is dialysis-related amyloidosis (DRA). After 5 years or more of standard HD, DRA is a common cause of:
- Arthritis-like pain
- Joint damage
- Bone cysts that can lead to fracture
- Carpal tunnel syndrome (wrist pain, numbness, and tingling)
What is Carpal Tunnel Surgery Like?
People who have been through carpal tunnel surgery explain:
"I had carpal tunnel surgery done probably 5 years ago with no problems. I had it done on both hands, about 2 weeks apart. I had tape and gauze wrapped around my hand for 10 to 14 days. I was encouraged not to use the hand while it was wrapped up. I never used a brace. Everything turned out fine." –Lee
"After 26 years of ESRD and 15 of pounding away on the computer, I also have neuropathy and carpal tunnel. I had my right hand done in May and am very happy with the improvement. It hasn't eliminated ALL pain and numbness in my hand, but has lessened it greatly." –Mary
DRA is also a rare cause of:
- Enlarged tongue
- Heart problems
- Cystic or soft tissue tumors
- Inflamed colon
After 20 years on standard in-center HD, 80% of people have DRA. No one knows why one in five people don't have it. MRIs show amyloid in the body much better than standard X-rays or even CT scans.
What It's Like to Have DRA
What does amyloidosis feel like?
"I have been on hemodialysis for about 18 years and have been having problems with DRA for about 8 years. It has been giving me problems with arthritis in my shoulders, hands, hips and neck and carpal tunnel syndrome in both wrists. I have had several operations on my hands and three on my wrists. My neck has gotten so bad recently that my doctors believe that I need to have my cervical spine stabilized to keep my neck from easily breaking. But the bones in my neck may be too brittle to support the bracing, making the surgery ill-advised." –David
