For March and April we have invited men with lupus to share their experiences for our blog. This month's article comes from Gareth who was diagnosed very recently. Thank you to Gareth for taking the time to share your story.
I was diagnosed just a few weeks ago, after two years of investigations, tests and illnesses.
I have had lots of issues that all relate back to lupus, from infections (cellulitis) in my legs and hand to a blood clot in 2013 which was related to the antiphospholipid syndrome I was diagnosed with prior to lupus. The worst symptom I’ve experienced is the blood clot, which is most common in women (as is lupus) and usually in the leg. I had it in my shoulder, fairly close to the dangerous organs. I had no surgery or accident of any kind to cause it - this clot developed itself from nowhere. I spent two weeks in hospital with it. I also suffer from infections easily, so any small cuts then seem to develop and get worse, rather than heal up.
I have had to go for tests once a quarter for the past two years, and have even now recently had a kidney infection over Christmas 2014. The lupus has been affecting my immune system and organs a lot in many different ways over the last two years which has caused me four hospital stays, endless amounts on antibiotics, steroids and also warfarin for life due to the risk of blood clot.
All I can do to manage it is be careful with the warfarin and keep my levels in a safe range and try not to be clumsy. It is a shame to be on tablets for life at 32, but without them I would be high risk for all sorts of problems.
It is still early days in my life with lupus but I’ve already had all sorts wrong with me as you can see. Hopefully now that I have a diagnosis and I’m receiving treatment it should allow me get it under control.
Next month we will feature more stories from men with lupus. If you'd like to learn more about lupus in men, you can read our factsheet online at lupusuk.org.uk/images/pdf/1...