Lupus and free eye test

[MrGrey1234]

How come as people with SLE have to have yearly eye test, dont get it free we have to pay ??

[catblue1865]

Really? Didn't know that, dosent seem fair. I have type 2 diabetes and have to have annual eye screening and I don't have to pay for them.

[MrGrey1234 in reply to catblue1865]

I know, especially because you are told by your consultant that you have to because of your medication

[sarahalice]

It's not fair. I've also been advised to have the thorough test costing even more. Is it because there's so few of us, so we don't matter!? Lupus is a very expensive hobby 🤣🙄

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[Prunes]

I don't believe that lupus patients need to have a yearly eye test unless they are receiving hydroxychloroquine. I have a yearly eye test because I am on long term hydroxychloroquine for lupus as HCQ can cause problems with the retina. I attend the local hospital for free retinal screening.

[Suvi8901 in reply to Prunes]

Do you get annual NHS reminders from ophthalmology?

[Prunes in reply to Suvi8901]

I don't get reminders. After each appointment they book me a new appointment for a year later.

[Suvi8901 in reply to Prunes]

Lucky you!👏The last time I saw my ophthalmologist was 2.5 years ago. This covid pandemic has delayed most elective appts.

[MrGrey1234 in reply to Prunes]

I am also on hydroxychloroquine, the consultant at the hospital said I need to see an ophthalmologist, but not received an appointment, been on it now 13 month,

[Heatheric]

You should really be seeing an opthalmologist rather than a high street optician - my GP referred me. As it happens, I do have a free annual test because my mum had glaucoma so I organise the other one so that they are 6 months apart. The opthalmologist one is slightly different and more detailed - he is looking for central vision damage rather than the glaucoma test which checks for visual fields (side vision).

[BonnyB]

I agree. Had a text from my gp telling me to book an eye test where I can pay extra for the test need when on hydroxychloquine, then send them a copy of my prescription to my gp.

[GloomyEeyore]

I didn’t know you had to pay for an eye test. I live in Scotland and eye tests are free for everyone. Only pay for glasses if they are needed. Currently need a yearly eye test as I am taking Hydroxychloroquine.

[chrisj]

I didn't pay anything when the test was arranged by an NHS rheumatologist at hospital and I can't remember if I paid anything when the optician wanted to do a similar, much shorter test, my son says not.

I was taking hydroxy for a few years and had never had a thorough test at the hospital. When the drug was stopped because blood tests were showing no results for lupus and things were stable, the rheumatologist wanted me to see their opthalmologist which I did. It was a long process but it came back as all being well in my eyes and cost me nothing.

[Potatoheat]

I have yearly eye tests with a hospital based gp specialist as I am on hydroxycholoquine . They are free and the full test, drops etc. Apparently I have lovely retinas but am developing cataracts slowly. I had tests originally when I started , then they said they were not necessary but now say they are .

But definitely free if you are on Hydroxy.

[marypw in reply to Potatoheat]

I think it depends where you live. Our CCG won't pay for OCT tests. I get my standard annual eye test free because I'm over 60 but pay £25 for the OCT test.

[SjogiBear]

I was told to just go to the optician and get a yearly eye test with the add on of the OCT scan at my own expense as I was on long term hydroxychloroquine. Unfortunately last autumn the optician picked up an abnormality on the OCT and advised me to stop taking the hydroxychloroquine immediately and referred me on to the eye clinic at the local hospital where they repeated the scan. Unfortunately I now have damage although the ophthalmologist would not confirm or deny that it was due to hydroxychloroquine. To date I have not heard anything more from ophthalmology or rheumatology but am just left to get on with it. I don’t know if this is due to the pandemic, but does anyone else feel that we really don’t matter?

[BeeHoneyB]

I’m on long term Hydroxychloroquine I also have Sjorens so I had been referred by Rheumatology pre pandemic to get free specialised eye checks. Post pandemic I have been referred by my GP for a specialist eye screen. It was last Saturday. I was also not allowed to drive for 4 hrs after the test due to eye drops and some tests administered. The consultant doing it said it’s due to the medication. He advised as long as I’m on it I will have yearly rate screening. He also encouraged normal eye tests from high street. So far so good with my eye screening. During pandemic my sight did seem to change so my optician saw me as I mentioned my medication and lupus. At that test I paid for additional photos of my eyes that help pick up problems. Then a year later my referral came through that I recently attended.