Greetings from a newbie

[SurferGuy]

Hi All,

I’ve just joined this forum today whilst carrying out research for a documentary I’m producing on Lupus. I will give more information on another specific Post, but for now I‘d like to introduce myself.

Firstly, I hope everyone is keep well at this difficult time for all – and more so for folk like us with serious underlying conditions – and I hope we all have managed so far to steer clear of this dreaded lurgy.

I’m a 44 years old male from the UK. I was diagnosed with Lupus in July 2008. Like most, to say I was distraught and scared witless is an understatement. I was worried for myself, but more than this, I was worried for my wife and mum. If it was just me alone, I would’ve been absolutely fine with it and would have just gone with the flow.

Prior to diagnosis, I was an absolutely fit and healthy guy. Very rarely sick. I was playing football twice a week – sometimes twice on the same day, afternoon with my work colleagues, then evening with my friends. I went to the gym twice a week. Ran twice a week. Surfed a couple of times a year (wasn’t very good at it… and still not very good at it now). And a few other sports thrown in in between.

But all of this ground to a halt soon after returning from a ski trip. After returning I felt a mild pain in my left knee. At first I thought it might have been a mild strain from football, but couldn’t think how I could have got it. Then I got the morning pains and fatigue. Couldn’t bend my knees or fingers, walking up and down the stairs became difficult etc.

I was sent to a rheumatologist who at first diagnosed it as arthritis. After initially being distraught, I thought “OK! I can live with this”. But soon after I received a letter telling me it was SLE. I’d never heard of this so done a Google search. And that was it! I was scared witless. Distraught.

I was put on the usual base line drug of Hydroxychloroquine. Then a couple of years later I was on prednisolone.

I had no organ involvement until 2017 when all of a sudden my kidneys were attacked. I was put on a high dose of steroids and mycophenolate. I was also asked if I wanted to participate in a trial for Belimumab (Benlysta). I’d read of this drug and the feedback seemed very positive, so I jumped at this chance. As with most trials, the only downside was that I could be trialling the REAL thing OR just a PLACEBO! But I was up for it. Here’s a link from a UK forum I’m part of of my journey on this trial. Warning! It’s a lengthy read! thelupussite.com/forum/inde...

I’m currently feeling a lot better than I was a few years ago, but then I’m also on very high doses of all my medication!

I feel I may have gone on for far too long, so for now I’m looking forward to keeping up-to-date with everyone and also to carrying out some research for my documentary. If anyone has any specific questions about my project, I will be starting a new Thread soon so please free to ask any questions you may have.

Thank you