For the last article in our series of stories from men with lupus, Aaron has shared an account of his experiences. Thank you Aaron for taking the time to share your story.
Like most of people, I had never heard or come across lupus before I was diagnosed. It all began for me back in November 2011 (22 years of age) where I was initially diagnosed with a simple chest infection; the doctor disregarded my joint pain as a result of my job (supermarket team leader). Over the next six weeks I was given four different antibiotics which failed to work and my condition continued to deteriorate, so much so I was admitted into hospital on Dec 27th.
After two weeks I was discharged with no diagnosis given. Over the next three months, I was admitted a further two times to hospital but still no diagnosis. My physical condition continued to deteriorate and I had lost three stone in body weight and muscle mass.
Now that brings us to April 2012 where I was admitted yet again to hospital. Finally I was diagnosed with lupus SLE after I developed severe mouth ulcers alongside crippling joint pain all over my body. Lupus SLE had now started to attack my kidneys (as well as my lungs). It was decided that I’d undergo a kidney biopsy. As a result I suffered an internal bleed from the kidney which sent me to intensive care where I stayed for four weeks.
Intensive care is a big blur for me, so I’m relaying this part through my family's experience. The first two weeks of ICU I had to be fully sedated but began to attract infections and complications due to SLE. The doctors had provided me with the most powerful drugs to deter the SLE but if I didn't respond to them there was nothing else they could do. Luckily I responded.
SLE had now attacked all my major organs and I was given less than 50/50 chance of survival on three occasions. I suffered a further setback when the SLE attacked my heart. Immediately a drain was inserted and two pints worth of infected fluid was emptied. Following this, my vitals began to improve and I was on my road to recovery.
Being in intensive care for a month resulted in my body becoming that of a ten year old boy. I had lost the majority of my muscle mass and in total weighed less than 60kg; therefore left totally dependent on the nurses. One month later I was transferred to a rehabilitation hospital for six weeks where they helped me on my road to recovery; mainly learning to walk again.
I was finally discharged home at the end of 2012 with various medications. I was on 2g mycophenolate, 30mg prednisolone steroid and lansoprazole; also I'd had a five dose course of cyclophosphamide whilst as an inpatient. After nine months I was stable enough to wean off the steroids and to this day I'm solely taking 1g mycophenolate twice a day, which I've been told will be a long term solution so long as it is effective.
Living with SLE is a very strange thing. I can go weeks feeling relatively normal with next to no symptoms but then there are days I wake up feeling heavily fatigued for no apparent reason; to a point where it is a struggle to even get out of bed. For someone who was fairly active and social it is incredibly frustrating considering I cannot do most things I could prior to my illness. I particularly find this hard to explain to friends and family because for all intents and purposes from the outside looking in, I'm 25 years old and should be living my life to the max but in reality I've become somewhat introverted and very safe in my decisions. What I do find with SLE is when I do fall ill it takes a whole lot longer for me to get over the illness so this is another reason why I try to be preventative in my life rather than reactive. I'm currently on annual check-ups with my consultant; extended from six monthly and before that monthly.
My message to fellow people with lupus is to continue the good fight, try and keep your bad days to a minimum and to never ignore any obvious symptoms. For me it has been a long hard road but I’m steadily improving. It's definitely a road I don't want to go down again!!!
Tough times don't last; Tough men DO!
If you'd like to learn more about lupus in men, you can read our factsheet online at lupusuk.org.uk/images/pdf/1...