New glasses

[Amy65]

Went to collect glasses to was telling me there's a new drug out to help with uvittis vision loss it's like biologics but depends who gets it .gonna ask when at eye hospital.c what criteria needed do anything to get vision back amy

[Hidden]

That would be so good!

Let us know if it helps or is available for you.

[helixhelix]

As I understand it, these are the same drugs used commonly in RA. The "new" thing I think is to offer them to people who have uveitis without also having another auto-immune disease. So methotrexate and azathioprine, and then biologics such as adalimumbad/Humira and a couple of others are in trials at the moment.

But if there are even newer ones that have been approved, then do tell us!

[Amy65]

Hi I have ra and anklossing spondlittis so 2 auto immune conditions. I have the uvittis in both eyes due to the anklossing spondlittis. I have been on methotrexa slazaprine and 7 biologics .remacade Enbrel twice Humera..cimzea.golmumba tolicmab .Now secukinumab.also unlicensed drug concept gold injections .So hoping I'm a suitable for these new tablets amy

[Hidden]

Hi Amy65, if you ever find out the name, I would be glad to know. I have had chronic uveitis for over 30 years and my sight is damaged now, so that I cannot drive. I live where it is rural and really need to drive again and could, if my vision just improved a bit. Kind regards,

[Amy65 in reply to Hidden]

Hiscuffyrabbit u are the 1st person I have met that has uvittiues in the same as u live rural and can't c to drive .have u had the otex implant done I've had them twice worked well then took cataracts in back of eyes had them removed .vision still not good .hope u don't mind me asking do u have as to .I've had uvittis since 1993 I was 28 but didn't pick up anklossing spondlittis till 2002 yet rheaumtoid arthritis in 1997 .rheaumtoglist says I have both I'm his only patient with uvittis vision loss so I'm his experiment he works with my eye consultant it's a joint care makes a difference. I'll let u know hugs amy

[Hidden in reply to Amy65]

Hi, Amy65, To answer your question, I got the uveitis following having radio-opaque dye injected into my spinal canal during a myelogram for back pain in 1988. As soon as the Consultant Radiologist put in the dye, (which was basically iodine,) into the dural space round my spinal cord, it started to snow black specs. My blood pressure then went through the roof for several days and I was on 15 minute obs day and night. Because the dye had caused an allergy within my spinal cord, (the Consultant hadn't even bothered to ask if I was allergic to iodine, which I knew I was,) it set up inflammation at the backs of my eyes and a lot of the blood vessels at the back of my eyes burst. Chronic uveitis then set in. I had to fight like hell to get them to do anything at all for me, and they only did because it was their fault. About one third of the patients in the Uveitis Clinic at Moorfields have uveitis as a result of inflammatory disease elsewhere, either like you in the spine and joints or inflammatory bowel disease. Another third have it as a result of a chronic lung disease and another third have it as a result of bad allergic reactions like me. My Professor, who has worked with uveitis all her life, reckons some of the causes are environmental.

[Amy65 in reply to Hidden]

Scuffyrabbit u have been through the mill to that's awful .my eye consultant has tried every thing to get my sight back 7 biologics .then otex eye implants worked for a while but caused cataracts to back of my eyes .Now on steroid eye drops maxidex .I recently had electro nerve tests done as she has to build up a case to put to nice for the new tablet and speak to my rheaumtoglist to c if it will work with my biologics .I so miss not driving like u I live quite rural nearest town is 4miles even shop is 2miles .RNIB has been a great help to me .when I'm next at eye hospital I'll get the name of new tablet and let u know lovely talking to u hugs amy

[Kai-- in reply to Hidden]

.

If this is of interest at all, Amy65 & scruffyrabbit, this young autoimmuner (Katy) has uveitis 👁 & glaucoma 👁 ( healthunlocked.com/nras/pos... ). [Merely an ‘aside’ if this type of experience interests you.]. These maladies are merciless/ ruthless. 😳 🤦‍♀️ 🤦‍♂️ Wishing you both the very best. 😌 🙏 🍀 🌺 🌞

.

[Amy65 in reply to Hidden]

Scuffyrabbit have u been on cellcept.its an unlicensed drug but helps with vision .only thing is blood tests weekly .amy

[Hidden]

Hi Amy65, I am a patient at Moorfields Eye Hospital and they have only ever treated me with steroid injections, tablets and drops. I've made a note of the Cellcept. and will ask them next time I have an appointment. My vision is distorted in both eyes by the uveitis and they are thinking of operating as I can't get a true idea of how anyone looks anymore. However, they say the operation is risky so I'd prefer the medication! Many thanks,

[Amy65 in reply to Hidden]

Hi scuffyrabbit just read this post of yours .I've had surgery twice worked for a while then vision went blarrey again I like u it's both my eyes affected to so know how u feel be interesting to c how new drug works I'd try anything lol amy

[Hidden in reply to Amy65]

Hi Amy65, yes, I'd try anything too. I enjoyed drawing people's portraits before my eyesight went bad. It would be so lovely to do fine work again, like drawing or sewing, not just the freedom driving again would give me. All I can do is the computer on big print! I hope you find a solution that lasts, regards,

[Amy65 in reply to Hidden]

Hi scuffyrabbit I will get the name and diffently let u know I'm like u would try anything to get vision back x amy

[helixhelix in reply to Hidden]

Have they ever discussed trying disease modifying drugs with you - like mycophenolate (cellcept) or Humira? Or do you take them anyway for the RA?

[Hidden in reply to helixhelix]

hi helixhelix,

They never will seem to provide me with any of the DM drugs. They state in Cambridgeshire that because my blood test is not positive for RA even though I have Sjorgen's Syndrome, Raynaud's Disease, six discs gone, my hands and feet all distorted and inflammatory eye disease, that there is no evidence I have RA! Not that they hardly ever do my blood test, perhaps only once in 5 years. My husband's blood test is positive for RA and he only gets the cheapest Hydroxychloroquine and his hands and feet are now so deformed he cannot even make a cup of tea, so the care of both of us is done by me. So far as we can see, they hate us and feel people like us with chronic disease are the cause of the NHS failing, (we have actually had that said to us.) Yet they will spend millions on hopelessly premature babies at Gt. Ormond Street and put them through countless painful operations they have no powers to consent to, which I find morally contentious as they are using the children for experimentation. If anyone asked me what the NHS was really for, I would say it was to use stupid working class people as free guinea pigs to find out more for the NHS. I've only ever had three operations in my life, each one of which failed and left me, (and my son, who was my only pregnancy and was born with cerebral palsy after a midwife left us on our own for hours at the end stage of labour,) more disabled.

[helixhelix in reply to Hidden]

Dreadful! Presumably you've been round the houses to change this - diff GP, PALs, second opinions, MP etc.

[Hidden in reply to helixhelix]

Hi helixhelix, we have tried everything. We really needed to move away once they had messed up the delivery of our son, (he was perfect at full scans and amniocentesis at 20 weeks of pregnancy and it had taken 10 years and a small fortune in infertility treatment to get him, there only ever being 3% chance I would get pregnant.) But we never had the money, both being disabled with a disabled child to try to help. I had asked and was fully entitled to a Caesarean delivery, but they had flatly refused, insisting on putting me through a normal delivery, with six prolapsed discs. When it went wrong and he was born with cerebral palsy, they simply blamed us for their incompetence and we were told "Two cripples like you had no business having a child anyway!" We threatened them with the National Press and they paid for an expensive private education for him on a Statement of Special Education Needs. He is now a successful soft wear designer, working in London and abroad. He's 35 and didn't inherit RA! He's very fit but has a neurological deficit down his right side and a speech defect. The NHS isn't "Free at the point of Access and Available to Everyone." It's only for those they approve of!!!!!!!

[Amy65 in reply to Hidden]

Hi scuffyrabbit sorry to read this and the way u have been treated is disgusting no one should be treated like that .I know how hard it is for ur son with cerabla palsy my brother in law had similar experience at birth he is affected down his left side speech and epitlepic .his mother passed away not long after he was born .My father in law was left to bring up 3 sons .it was very difficult for him but he done it.im married to the middle son and helped look after my father in law and disabled brother-in-law.so I know how u feel .it son has done very well and has a great job u should be proud hugs amy

[Hidden in reply to Amy65]

Hi Amy65, I'm glad you helped your father-in-law and brother-in-law. Families don't seem to feel much sense of duty these days. There is nothing like a bit of proper help from your own family, whatever else you get from allowances or paid carers - it's never as good as your own people would do for you. Kind regards,

[Amy65]

Hi helixhelix I was on cellcept made me very I'll also been on every dmars I'm on my 7th biologic .best 1for me was remacade after 3years took severe reaction passed out when I came round was attached to a lot of machines frightened the life out of my hubby.so rheaumtoglist is working with eye consultant it's joint care to c what else to try spoke about new drug for eyes can't remember name amy

[helixhelix in reply to Amy65]

How scary! Hope you got over it ok.

It's hard when you respond badly to drugs. But even tho' they didn't work out for you, they do work for some people so perhaps they will for ScuffyRabbit - so just asking her if they'd ever been discussed/tried.

[Amy65 in reply to helixhelix]

No problem I'm still on 1 biologic 7th 1 trial in era.thanks amy