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New UK member
HI everyone,
I read this site yesterday and found out that I am not so alone as I thought...in fact I am very lucky not to be so bad as most of you.
I was diagnosed with Sjogrens in 2000 when I was living in California by a fantastic doctor who lectures for Allergan on dry eye issues, especially Sjogrens. I was lucky enough to be put onto the clinical trials for Restasis. I have to say that it really madeno difference to me but following my doctors advice I started flaxseed oil (Omega 3 ) and that works really well. Each time I stop taking it my eyes get really bad.
I had 0.1 and 0.2 on the Schirmer tests and so diagnosed correctly with no tears in either eye. As I was using a bottle of drops a day, not only was it expensive but I developed a severe reaction to preservatives. Until just recently I was still using a bottle of saline every day, produced by Moorfields but I have managed to reduce it to 2/3 bottle daily currently.
My lower tear ducts had been plugged many times and eventually the surgeon sealed them off in 2003. Apart from losing 1/2 my vision in one eye due to an infection I am of course very light sensitive and always had sore eyes. The high cost of medical insurance and bills meant that it in the end we sold our home and have come to live in the UK where I am originally from so that we could survive.
We came back at the start of 2007 and by the summer the local eye hospital had me under Moorfields Eye Hospital. They have been battling ever since with eye pressure as well as infections and dryness. (As you all know the three go hand in hand!). I need a cornea transplant but they cannot do a full one because of the dryness and the high risk that i will reject it. In these two years I have totally lost vision in one eye now although the retina and optic nerves do not appear to be damaged, as they have used a bandage contact lens and my vision returned. The reason I have lost it is that my cornea has a vertical scar through the first infection that I gained when in the USA and also as they have had to use so many steriod eye drops they have pitted the surface of the cornea even more. The bandage simply gives me the correct shape again. However they cannot let me continue to wear a bandage lens as the dryness may cause more damage adn infections may get under the lens itself and breed quicker!
I have had minor surgery to unblock one of the lower tear ducts as I developed a severe infection it. As medicine cannot control the irrationality of my eye pressure they have recently performed a shunt (3.5hr operation!) this inserts a tube in my eye to take away the offending liquid. As this was only 2 weeks ago the success has yet to be seen. However the statistics are good.
Yesterday I had my first autologous serum eyedrops delivered and I am so excited. I am thinking of it as my panacea and that they will cure all the evils in my body.
I notice that other people have found it difficult to get these eye drops and it has taken Moorfields nearly a year of handling the NHS to get them through. Apparently the cost of them is prohibitive and it has to be proved first that there is no other method to help the situation BEFORE the NHS agree to this. Those people who have approached the NHS directly or through a local GP will probably never get it. The only answer is to get an eye hospital to fight for you. I knew nothing about this serum until Moorfields said that they were going to approach the NHS for me but the results seem fantastic for others. I seem to remember that the head of clinic there said that the cost was in the thousands for each applicant. My advice do not give up trying but ensure that your doctor can back up a statement that he has tried every other approved method with no good results and that this is the last option then the NHS will supply it for you.
Wow what an introduction and all to my health. I live in Hampshire, I am now retired (unable to get a job in the UK so it was a forced retirement). I still knit, crochet, make cards, do patchwork and quilting, do machine embroidery, digitizing designs on my computer, drive to see family and friends (only during the day as the glare of night lights hurts too much and impairs my vision!), I adore cooking, have a good size vegetable plot and a greenhouse that is totally my responsibility. So life does go on and I will not let it defeat me.
Looking froward to being a member of this group
Sjogrens gal
I read this site yesterday and found out that I am not so alone as I thought...in fact I am very lucky not to be so bad as most of you.
I was diagnosed with Sjogrens in 2000 when I was living in California by a fantastic doctor who lectures for Allergan on dry eye issues, especially Sjogrens. I was lucky enough to be put onto the clinical trials for Restasis. I have to say that it really madeno difference to me but following my doctors advice I started flaxseed oil (Omega 3 ) and that works really well. Each time I stop taking it my eyes get really bad.
I had 0.1 and 0.2 on the Schirmer tests and so diagnosed correctly with no tears in either eye. As I was using a bottle of drops a day, not only was it expensive but I developed a severe reaction to preservatives. Until just recently I was still using a bottle of saline every day, produced by Moorfields but I have managed to reduce it to 2/3 bottle daily currently.
My lower tear ducts had been plugged many times and eventually the surgeon sealed them off in 2003. Apart from losing 1/2 my vision in one eye due to an infection I am of course very light sensitive and always had sore eyes. The high cost of medical insurance and bills meant that it in the end we sold our home and have come to live in the UK where I am originally from so that we could survive.
We came back at the start of 2007 and by the summer the local eye hospital had me under Moorfields Eye Hospital. They have been battling ever since with eye pressure as well as infections and dryness. (As you all know the three go hand in hand!). I need a cornea transplant but they cannot do a full one because of the dryness and the high risk that i will reject it. In these two years I have totally lost vision in one eye now although the retina and optic nerves do not appear to be damaged, as they have used a bandage contact lens and my vision returned. The reason I have lost it is that my cornea has a vertical scar through the first infection that I gained when in the USA and also as they have had to use so many steriod eye drops they have pitted the surface of the cornea even more. The bandage simply gives me the correct shape again. However they cannot let me continue to wear a bandage lens as the dryness may cause more damage adn infections may get under the lens itself and breed quicker!
I have had minor surgery to unblock one of the lower tear ducts as I developed a severe infection it. As medicine cannot control the irrationality of my eye pressure they have recently performed a shunt (3.5hr operation!) this inserts a tube in my eye to take away the offending liquid. As this was only 2 weeks ago the success has yet to be seen. However the statistics are good.
Yesterday I had my first autologous serum eyedrops delivered and I am so excited. I am thinking of it as my panacea and that they will cure all the evils in my body.
I notice that other people have found it difficult to get these eye drops and it has taken Moorfields nearly a year of handling the NHS to get them through. Apparently the cost of them is prohibitive and it has to be proved first that there is no other method to help the situation BEFORE the NHS agree to this. Those people who have approached the NHS directly or through a local GP will probably never get it. The only answer is to get an eye hospital to fight for you. I knew nothing about this serum until Moorfields said that they were going to approach the NHS for me but the results seem fantastic for others. I seem to remember that the head of clinic there said that the cost was in the thousands for each applicant. My advice do not give up trying but ensure that your doctor can back up a statement that he has tried every other approved method with no good results and that this is the last option then the NHS will supply it for you.
Wow what an introduction and all to my health. I live in Hampshire, I am now retired (unable to get a job in the UK so it was a forced retirement). I still knit, crochet, make cards, do patchwork and quilting, do machine embroidery, digitizing designs on my computer, drive to see family and friends (only during the day as the glare of night lights hurts too much and impairs my vision!), I adore cooking, have a good size vegetable plot and a greenhouse that is totally my responsibility. So life does go on and I will not let it defeat me.
Looking froward to being a member of this group
Sjogrens gal
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