Hi there new to the site, 10 years ago I started suffering with problems with my right eye blurred vision etc i went to the optician and was told I had macular degeneration I was gob smacked when told nothing could be done and it occurred in older people usually.
Went to see my GP who referred me to the ophthalmic clinic in the local hospital 6 months waiting list and my right eye was getting worse by the day! Decided to go private and £3000 later on steroids etc my right eye was bleeding so bad I had to go for laser surgery on the eye to stem the bleeding, finally i got in to the NHS system! No one could tell me the cause toxoplasmosis was the obvious cause to the ophthalmic doctor but no drug except steroids worked.
The worst day of my life and the most frightening, on a Saturday morning i woke up totally blind and admitted to hospital for all kinds of tests one foreign doctor that I saw after three days said he had seen these symptoms before and the disease was called Bechets no one Else agreed with him, but after a week the rheumatoid professor and his team agreed this could be the case. Vision recovered to left eye but right eye beyond repair all kinds of drugs tried and on warfarin but only steroids kept the symptoms at bay.
I was referred near Christmas to Professor Phil Murray at Birmingham hospital and having looked at my notes his secretary phoned and explained that this symptom seemed very aggressive and he would see me within a couple of days as the Christmas holidays where approaching. I spent he day at his clinic and I will be forever grateful to him and his staff for that day, he confirmed that I was suffering from uveitis because of the Bechets disease and mentioned that they had great successes with Imfliximab.
Came back home and met with the professor of rheumatology at my local hospital and fair play to him arranged for me to go on Imfliximab as a experiment with Manchester university successes! After six months I was on 8 weeks cycle of Imfliximab and 7.5 mg methetroxate per week instead of taking 22 difference pills per day and symptoms stayed stable.
So far I have been very pleased with myself as I work as a skipper of a fishing boat and in ten years I have had 4 weeks off sick because of his illness felt shit many a time but fought through it, two years ago imfliximab was wearing out at seven weeks so cycle changed to six weeks treatment.
Last three months white blood cells count up by a bit but today's results came back that white blood cells count are very high I do not feel as as I have any infection etc but. Do have a bad feeling about what they will have to say Next Tuesday when I see the consultant and get my infusion.
Twitter. W J Jones. @Wjj66W