March's Blog - Gareth's experiences of being a male with lupus

[Paul_Howard]

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...

[Bronagh2015]

Hi Gareth, it's great to see a man on here and read your story. I can only imagine how difficult it must have been for you to get a diagnosis and to explain to everyone what

Lupus is and to understand it yourself! Honestly things will get easier now the doctors know what they are dealing with and while medication the rest of your life isn't perfect it does'nt do to think where we would all be without it!! I really hope you have good support from family and friends and thanks again for coming on here.

[Gareth_Coombs in reply to Bronagh2015]

Thanks

[Purpletop]

How strange, to get a clot in the shoulder! Do the doctors have any idea what triggered this? With women at least we have hormones to blame but with you guys, what?

I like your positive attitude - it is a pity to have to take tablets so young but hey, at least there are tablets available to take, even if most are nicked from other diseases. As you said, with proper treatment things will now start to improve - keep positive!

[Wendy39]

Great to read your story Gareth. Like you said, at least now with a diagnosis and therefore explanation of all your illness and symptoms, you know what is wrong now. Let's hope your doctors take good care of you and get you the right medication fast. Good luck and stay strong.