Vision issues and getting quite worried

[pattypatchwork]

Hi,

I have been told to stop the hydroxychloroquine for 7 days because i am having vision issues with my left eye. i have wiggly lines in my vision and any writing i try to read is very blurred. I had my eyes tested 5 weeks ago and was referred to the eye clinic due to there being a lump in my right eye and was told that my left eye is very health. Had the appointment at the eye clinic and was again told that my left eye is healthy and had confirmation that there is a lump in my right eye will be investigate further. In the meantime i went back to the opticians because i was convinced that my new glasses were wrong because i couldnt see well with my left eye. told prescription is correct and that the vision issue could be neurological (was told that lupus can attack the brain - thanks for that) & have been referred to a neurologist and am waiting for an appointment .

In the meantime i have rang the rheumatology department and have been told to stop my hydroxychloroquine to see if there is an improvement. if not, i am then to stop the new Raynaudsmedication which was started a couple of weeks after the hydroxchloroquine as it could be that.

Its now 3 days since i stopped the lupus medication and so far no improvement. As you can imagine, i am getting really worried.

Has any one else had this issue with their sight?

[Roarah]

I do have a large amount of floaters in my right eye, I had a retinal tear in my teens. I also was getting blurry vision often for a year but my doctor thought it was from my dry eyes and it did improve after I started using the drops. I notice my floaters more when it is very sunny or I am reading on a screen and more if my eyes are dry. Have you tried wetting drops. It might help the blur. I hope everything turns out ok.

[pattypatchwork in reply to Roarah]

hi, the optician has given me eye drops which i started on Friday so hopefully these will help

[Buckley123]

Hi I’m not diagnosed with lupus possible uctd but my bloods are negative

I have brain lesions which where active now not according to my last scan ..

I panicked so much at fist but in my experience it isn’t as scary as it sounds no one seems that worried about me. I see a neurologist and he’s very laid back about it all.

I have issues with my eyes can’t really explain it more like slow vision with floaters pressure type migraine ish that doesn’t always hurt my sinuses feel odd too ..

I hope this eases you a little xxx

[pattypatchwork]

hi, i have had the inside of my eyes examined by both the optician and the eye clinic and they had said that my macular, optic nerve and inside of my left eye are healthy as is the right eye (bar the lump)

3 days now with no lupus medication and still no improvement. I have to ring the clinic on Thursday is no improvement by then to let them know and will then stop my new reynauds medication. Luckily i am able to work if using a big screen, it tends to be when using a lap top or trying to read that i have issues.

[Sara_A]

Yes I've been on hydroxychloroquine for 10 yrs and just recently had to stop it and the opthamology consultant has found some possible changes/patches on my right eye but cant be sure yet so re checking in 3 months but says not to have ot again.

[Pug-Mum-89]

I too have vision problems! My left eye I often see zigzag lines then all of a sudden I go temporarily blind in that eye apart from a tiny spot that I can still see through.

It comes down like a fog over my eye almost lasts for a while then as quick as it came on it will disappear! It’s only ever in my left eye.

My doctors must think I’m crazy. But nothing ever seems to get done about it! I mention it every time I see my specialists but I’m still no closer to finding out what it is! 🤷🏻‍♀️

[CecilyParsley]

Hi Patty. I am so very sorry that you are having these problems . I completely identify with how anxious you feel as I have been taken off Hydroxychloroquine for the same reasons. My new Rheumatologist increased my Hydroxychloroquine to 600 mg daily. After eight weeks I was struggling to read, the Amsler grid was wavy with grey patches. I went to my Optician and was told I had no lower left peripheral vision and macular oedema. I was referred to the macular unit and advised my eye might rupture. I was horrified. I bet to my GP for advice and was told “ we don’t do eyes”. I went to my pharmacist and was told to reduce the Hydroxychloroquine down to 400 mg that I had been on for nearly ten years. My GP actually did ring me and told me to to call the Rheumatology helpline. The nurse advised me to stop the Hydroxychloroquine just like you were. At the macular clinic I was told my eyes were normal and there was no oedema. My headaches continued for weeks but have now gone but my vision is still too blurred to test my sight two months on. I hope you get some answers. I hope also that your Rheumatologist is supportive to you. I hope my take can reassure you a little that there can be recovery. Xx

[pattypatchwork in reply to CecilyParsley]

hi, thank you for responding and knowing that i am not the only one who has this vision issue. It seems that you have had a tough time with regards to this - i hope mine is sorted a little easier.

[CecilyParsley in reply to pattypatchwork]

I hope so too for you. It is a very scary situation

[TomWillingham]

Try the Amsler Eye Chart to check for macular degeneration, the primary eye disease associated with Plaquenil. BTW, does your rheumatologist know that Plaquenil has a half-life of 960 hours (40 days)? It takes a long time to get out of your system.

brightfocus.org/sites/defau...

[pattypatchwork in reply to TomWillingham]

hi, i didnt know that it could take that long to be out of my system...... I will ring them on Thursday as instructed to let them know if there is any change - which so far there isnt.

My optician had me look at the Amsler chart on Friday and parts of it were blurred but my macular is apparently ok.

[TomWillingham in reply to pattypatchwork]

Glad to hear that. When did you last see an ophthalmologist? I’ve been on 200-400 mg/day for over a decade. I get an exam from my ophthalmologist every year.

[pattypatchwork in reply to TomWillingham]

hi, do you mean an optician? i had my eyes tested last Friday and 5 weeks prior to that. At the initial visit, a lump in my right eye was discovered and i was referred to an eye clinic. i was there 3 weeks ago and had both eyes examined and the lump was confirmed and my left eye was diagnosed as being ok. i have dye injected into me on the 1st so the right eye can be looked at better to try and workout what the lump is and i will ask them to have a look again at my left eye as this is the 1 i am having issues with.

[CecilyParsley in reply to TomWillingham]

I did not know that Tom thank you. It certainly explains why I am feeling awful at the moment as I was taken off mine in July

[miccika1]

Hq toxicity is a very particular issue. Please call you eye clinic to confirm if they tested for hq toxicity or a regular eye exam. Regular eye exam doesn't qualify for you eye exam for hq toxicity that you need to do every year.

[Pug-Mum-89]

I’ve recently seen an ophthalmologist in Wolverhampton eye clinic. She says my eyes are fine apart from cataracts but they have to wait for them to get worse before they will do anything. I told her about my vision problems and she pretty much just waved it off 🤷🏻‍♀️

[Pug-Mum-89]

They put drops in my eyes which made my vision blurry so they could take pictures of my eyes? Etc then the ophthalmologist used machine of some kind to look into my eyes which I could hardly keep my eyes open for because the light really hurt my eyes 🤷🏻‍♀️ I’m sorry I don’t know what the exams were called 😂

[overnighthearingloss]

There are a whole lot of drugs that have unsavoury side effects. Not everyone gets the side effects but if you are one of them that may be getting bad effects, its worth talking about other possible options.

When I lost my hearing OVERNIGHT, I started to become aware of just how many drugs I was on could have played a part. It's an individual decision whether you are happy with reassurances, or whether you want to try a different route.