My name is Susan Rackley and I have axial spondyloarthritis. I was diagnosed with this in 2020 right as COVID hit. I have been suffering with this disease since my 20's and I am now 44. I saw a rheumatologist back then who said I had spondyloarthritis and had very little information to give me and the internet didn't exist so I ignored it for 20+ years and went on about my business until I hit 40 and my flares and inflammatory issues were wrecking my body and I needed to figure out how to get things under control. I decided to go back to the rheumatologist and figure out. I was immediately put on biologics (Cosentyx) which was working well but only lasted for two weeks and I was prescribed once a month. The doctor tried to get my insurance to approve me to have it twice a month but it was denied. She has switched me to Taltz and I am on month three and I see no change and I am in horrible pain. Hopefully it decides to work or we switch again.
Besides AS, I am currently dealing with NASH, stage 4 cirrhosis and I found out I have a rare genotype (IZ) and am Alpha-1 Antitrypsin deficient. So these are both contributing to my liver failure.
Charlotte, North Carolina, United States of America
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