Opthamology appointment re Hydroxychloroquine

[lizp28]

Are any of you going to an Eye hospital for the yearly checks if taking hydroxychloroquine? I’m photosensitive under overhead lights and unfortunately it’s around a four hour musical chair situation at my local hospital so to say I get anxious is an understatement especially when I’m looked at as some sort of freak if I ask if I can wait in a room with no overhead light! I’ve recently been to Vision Express and they do extra testing now so wondered if any of you have found this is sufficient for what your Rheumatologist wants to see? Anything to avoid being passed from pillar to post at hospital! Thanks all 🤔

[Polina44]

Hi,

Yes I have just been for mine. But they were super quick. Not much waiting about. I had three tests done and quick chat to a nurse. Then the consultant looks over results and calls if any problems found.

I’m not sure if this testing can be done at the opticians ? Perhaps someone else can advise. Maybe if you could rearrange your appointment so you are first to be seen if you explain your situation that will avoid the hanging around?

Lx

[lizp28 in reply to Polina44]

Thanks so much for your reply! I’ve just had confirmation back that the results from optometrist were sufficient so no more hanging around for hours at hospital!

[Polina44 in reply to lizp28]

Oh that’s great. One less stress!

L x

[marypw]

Yes, I’m going to Spa Medica in Watford for some high tech scans in a few weeks - I am getting these tests annually. This is a private hospital but is doing this for the NHS. No hanging about!

I also get an OCT scan at Specsavers every year. The optician there told me to do an Amsler grid test every week. I’ve been on hydroxychloroquine for a long time and at 400 mg. I’ve also had surgery for a macular hole, so I’m keen to get all the checks I can!

[JenniferW]

I go to a normal optician, they do the extra tests needed along with eye scans and explanations of why my eyes are okay and what they look out for(I think they like explaining this to interested people!). One of the opticians used to work at the hospital where I go for rheumatology appointments so she was especially clued up.

[lizp28 in reply to JenniferW]

Thanks so much Jennifer..this is what I’m doing from now on…no more eye hospital after a four hour wait..and that was being fast tracked! They have now put a sign up saying prepare to be there for six hours!! Not good for those of us with lupus and photosensitive! X

[Lizard28]

I go to the hospital yearly because of my dry eyes, in fact my ophthalmologist asked me for the first time in five years asked about being on hydroxy. They do all the yearly checks which is reassuring, I am pleased to get these as I also have cataracts starting. He said not to worry about this as I’m on the system and he is keeping an eye on them and will do them when he thinks they need done. I also let Specsavers do the tests which I paid for just for reassurance. I wouldn’t stop my yearly checks as I think they are more thorough than the optician. I’m never waiting too long at our hospital which is a bonus.

[KnitSewPurl]

Hi ,I have yearly checks with my eye consultant at the hospital and my corneal consultant as well. My eyes are alittle more complicated. I was on 200/ 400mg Hydroxychoroquine which I had to stop briefly for a year

Due to changes to they couldn't tell if they were due to drugs or my macular or something else. They also discovered that I had extremely dry eyes and have Sjögren's - diagnosis from my corneal consultant. But not currently on steroids as it is not bad enough. Currently treating it with just eye creams at night and eye drops in the day and eye heat pad which helps alot. But still do get the grittyness and pain in my eyes still .

Pls , do see a eye consultant at a hosp even it is 6monthly or yearly it is for the benefit of your eyes . They have more specialist machines at the hospital far more than an optician do to monitor your eyes.

The eye hospital travel takes me about an hour or so , and it is sometimes we wait for over half a day to see her after going through all the test she has wanted before seeing her . Yes , it is a very long day for us as well. Compared to the corneal specialist it is very quick .

Hope it makes sense to you also make sure you wear your dark glasses when you attend and bring someone with you. For you will not be driving back after all the eye drops and the test done. You will eventually get use to it. The drops dilates your pupils to help the photographer taking the photos and also the doctors to see better into your eyes.

[lizp28 in reply to KnitSewPurl]

Thankyou so much x

[KnitSewPurl in reply to lizp28]

It was Specsavers that found my spot in my eye and I made them to do the referral because I have a strong family history of macular. They did not want to but I made them which I was glad because now I have both my eye have them. And I am under a specialist genetics professor for it on the top of all other things that is going on. This was discovered over 10years ago. I was in my early 40's. This was pre Oct days when it was done as a routine they did it for everyone and we did not have to pay... ! Yes ! They had them them and were using it to photograph everyone's eyes! People did not know 😉 until now.

[CecilyParsley]

Hi Lizp28I get my annual check via Specsavers. I pay £10 for a hospital grade scan. Here in Wales Specsavers are the front line for our NHS so twice I have been sent straight to their macular unit which then sends the imaging direct to the hospital. Xx

[lizp28]

Thankyou so much Cecily…this is what I’m now doing at Vision Express. X

[Cazpurple]

Rheumatology told to see my optician every year and the hospital every 5 years for CT scan.

I made an appointment upon diagnosis and before starting medication for a starting point.

I have just had my yearly optician appointment and there were no changes. He knows my diagnosis and my meds so he's watching carefully.