Getting the news was expected, but still hard as I am pretty sensitive to medication I think due to my small frame. I call myself a one-percenter. If it has a small chance of happening…even one percent it happens to me. Fever blister, infertility, hair loss, eye inflammation, dry mouth- me, me, me.
So the journey to start 25mg of steroids daily (a lot!! get ready moon face) and 2000mg of Cellcept…an immune system blocker so mask up begins today.
I am sick. Lupus does that to you. Most days I do not mind. Most days my disease is manageable. On the hard days, it sucks, but all in all I am blessed. My struggle is silent. I go to work daily. I rarely complain. The people who know the truth are my son and husband. They feel the weight of my lack of energy and overall fatigue. Sad, but true. My job gets the best I can offer while my family suffers.
I started with Plaquenil and it worked until it didn’t. Methotrexate was a no go after a few months. Cellcept lasted a month, but I am stopping it due to excessive hair loss. I am sick, but I refuse to look sick.
This was a good pic of me in November. Hard to believe that was 3 months ago.
I have such thick hair that the hair loss is still somewhat disguisable, but I see it and feel it.
This is Lupus. It is sneaky and complicated and can bring even a confident person to their knees. I am stopping Cellcept until we can start something else. I am willing to endure the temporary pain. Pray with me as we figure this out. I think Benalysta may be next.