Just an update and some positive news.
Some of you might remember from previous posts that I've seriously struggled for many years and had an absolutely awful time last year, I went to see the Prof D'cRUZ at St Thomas. After a nasty flare last year I never felt as if I fully recovered and even though I could function I never felt as if I had come out of the flare fully.
I went back to St Thomas's on 7th March and saw the amazing prof D'Cruz, he increased hydrox from 200mg to 400mg, gave me a steroid injection of 80mg, and put me on a drug called mecaprine which is unlicensed in the UK, I was quite wary of taking this drug but decided that Prof D'Cruz is the best in the business and I had to trust him. Thank God I did!!!
In the last 3 weeks I have somehow got a life again!
For 7 years I havent been able to have a night out as it would put me in bed for atleast a week afterwards, yet this is the 2nd weekend in a row that I have been out... in fact to tell the truth its the 2nd weekend I have been out with a group of friends and my husband and done a pub crawl!! I can actually drink alcohol again, although I am being very sensible and only having a few, I can walk from pub to pub easily.
The fatigue which was quite extreme has now subsided, infact I would go as far as to say I feel slightly hyperactive - I cleaned my house from top to bottom at the weekend after years of relying on a cleaner as a good clean would again put me in bed for a week.
I was taking naproxen 3 times a day, co-codamol 4 times a day mixed in with tramadol or dihydrocodiene, for the last 2 weeks I've managed to reduce all of these drugs, I havent had any tramadol or dihydrocodeine for 3 weeks, no co-codamol for 2 weeks - I can now see how addicted I was to these, and I'm down to one naproxen a day usually towards the end of the day.
I have had such a good time, me and my husband have done nothing but laugh for the last 3 weeks, we've spent so much time together having fun, where as before I would go to work then go to bed, we could go for days without seeing each other.
My sense of humour has returned and instead of suffering with terrible brain fog I have found myself being quick witted again.
I always remember before I was ill I was a fun person, I did anything for fun, I was spontanious and at times quite silly and I can feel that side of me coming out again.
I have been worried about this subsiding and the drugs wearing off, I know how unpredictable Lupus can be and I know at some point I will go into a flare again.
I could worry myself sick about this but have decided to put it to the back of my mind and enjoy actually having a life again.
Goes to show..never give up hope!