My Amyloidosis

In March 08 I went into hospital and was treated for pneumonia and had fluid drained from around my lung but blood and urine tests showed other problems. Over the next two weeks I was poked and prodded and underwent a kidney biopsy, and a bone marrow biopsy.  Eventually the consultants concluded that I had probable AL Amyloidosis based on the protein leakage in my urine and the biopsy information. I was referred to the National Amyloid Centre in London for a check up and confirmation of the local diagnosis.  This happened in April 08 and basically confirmed that I had systemic amyloidosis of type AL.  This wasn’t as straight forward as it seemed as further testing showed I had evidence of the AA (inflammatory) type although I had no obvious symptoms.

It took until June for them to finally confirm the AL type and suggested chemotherapy as a course of treatment.

My local hospital, after consulting with London, decided that the CTD regime was going to be the best treatment as opposed to the MelDex version of chemo.  There is a trial taking place on the two basic treatment regimes as no clinical evidence has ever been done to prove which one is better at various levels of health, age and degree of amyloid body load, organs affected etc.  I was a bit confused as to why they chose this as they said that both treatments were statistically as successful as each other.

Anyway, I’m now starting my 6th cycle of treatment (Nov 5th) and hoping it’s the last (at least for a while).

Filed under: Case History on November 5th, 2008