Hello everyone, as I said in my 1st post, I had been diagnosed with DLE. I wondered if it was progressing to SLE but never went to a rheumatologist due to not having many in my area, and the ones that are do not accept my insurance. As the months progressed, I've have SLE symptoms but shrugged them off. One day I woke up partially blind in my right eye. It looked as if I were looking thru a lens smeared in Vaseline. I go to the opthamologist, and he notes that I have Sjogren's & told me 2 come back in a few days 4 more testing. I was scheduled Tuesday where I did more visual test, & test results showed significant visual loss in right eye, so he wanted me 2 see a specialist the next day, so I did. The specialist did a test where they inject dye into my veins & take pictures of my eye. The results showed a filler in right eye & he also said the arm to eye time was too long so he ordered me a carotid Doppler test & wants me to see another Dr. for an MRI. I feel discouraged. Has anyone had a similar experience? Note: I have not taken any meds for the DLE, as I'm just getting told I have been approved for health insurance.
Sudden vision loss in right eye:( Do you think it... - LUPUS UK
Sudden vision loss in right eye:( Do you think it is Lupus related & do you think my DLE is progressing to SLE?
are you on plaquinil..hydroxychloroquin? It might cause eye stuff like that..it can for some folks cause problems...
ps/no eye thing , but I was deaf in my right ear for a while (woke up one day like that)...scary stuff isn't it? Hope you are ok...
I woke up deaf and stayed deaf. That can happen as well. I did have severe eye complications at one point but can still see thankfully.
wow! They really quickly put me on high prednisone..I hated the stuff, but guess it helped(didn't know for another year I had lupus)....
It was my misfortune that it happened to me at the holiday season and all the knowledgeable doctors on unavailable. I did my own reading and found out about high dose prednisolone potentially reversing the effects but too much time had passed to have any effect, whether it would have worked or not.
I'm glad to hear that in your case it worked. But more doctors need to be aware that its something requiring urgent attention
wow! yes no kidding...
Holiday time things usually happen to me too.,.not as bad as that, but fillings fall out...put back out, things like that. Yes and no docs around usually...
It was the ENT guy came to town much later, that sent me for I think the CRP test..and found inflammation...I think he suspected something and called me...but the test results seem to pass by my main GP...So another year passed etc..etc
The GP I saw at the time was useless (not my regular), then I posted something online for more info and a few people said it was urgent and to attend a&e. Unfortunately I trusted the unknowlegeable gp and did not rush. When I did attend a&e i got a junior doctor who again lacked experience and so about a week or 10 days passed before there was anyone with clout to speak to.
I tend to trust to my own judgement a bit more these days and i believe my own intervention has halted some nastys. It can often just be a waste of time to trek to unknowing professionals
i agree..
Thank you all for the replies,....the weird thing is that I am not even taking anything for the DLE at the moment! The eye specialist asked the very same question, as I know the meds for lupus can infect vision.
Hi
I had also lost my vision,it is something for A+E as it was related to having antiphospholipid syndrome, an MRA scan would show up the vessels around your eye and head,its not used alot they seem to op for MRI,but an MRA showed up alot for me along with blood tests,dont worry that you did not go to A+E sometimes its difficult to know what to do,I did not attend A+E at the time it was my rheumy and later a neurologist!Best of luck I hope you get more answers.
Thank you soo much, I appreciate it. I definitely don't wanna have vision loss in my left eye, as my right eye is affected. Hopefully I'll get some answers soon. XOXO
I was going to ask the same as I looked up what Hydroxychloroquine is to see if it could help my nails because someone wrote that their nails have been better since on H, but reading the possible side effects, I could have better nails, but end up with something worse!
I have also suffered visual loss in both eyes. When it happened a 3rd time and the eye consultant suspected
temporal arteritis, he put me on a high dose of Prednisolone which has now tapered down to a low 5 mg maintenance dose. Each time visual loss happened overnight and there was nothing anyone could do because the
optic nerve was affected (ischaemic optic neuropathy). Rheumy says I have CTD (form of Lupus). Don't worry
about the MRI - so far I have had 3 scans of my head including one with contrast media for a more detailed
view of the eye. They also did a scan of the blood vessels in my neck. The tests they are doing for you sound
very similar to my own and the doctors sound as if they are doing all they can for you.
Good luck with all your tests but do not expect too much from the results.
Thank you for the response. Yes, I had an idea that it was optic neuritis, because when I awoke partially blind, I tried to get as much info as to what could be the cause of overnight partial blindness. I've read that this condition is highly connected to MS, which I pray I don't have, and it could also be connected to Lupus as well, which is what my opthamologist noted to me. Thanks again for sharing your experience with me, & good luck to you as well, I will keep you in my prayers. 
I will think of you too Princess. There are links to this type of condition with diabetes and I have a strong
family history so I am at risk. Personally I need to make sure my blood sugar levels do not get too high or too
low by having regular meals and not eating too much carbohydrate. You can help by having wholegrain foods and trying to keep to a low glycaemic index diet. I don't always keep to it as I have a sweet tooth.... This is my personal opinion. It may help you to think about your eating habits. Take care.
Thanks again for the wonderful advice, you are awesome. I as well have a sweet tooth, as well as my father is a diabetic. I've been tested for diabetes many times, but I thank The Good Lord I don't have it. I just came from the eye Dr. & my ERG tests prove that my sight in my right eye is not corresponding with my brain. My ophthalmologist says he & the specialist are trying to find out if it is systemic. I'm thinking so, as one cannot just "wake up partially blind." Perhaps the DLE is progressing to SLE, I wish I could have some answers. Take care & big hugs
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