I will be starting plaquenil next week. I understand that it is recommended that a baseline retinal screen is carried out before treatment starts. Is this correct and what do I need to do to arrange this?
Baseline eye screen and plaquenil: I will be... - LUPUS UK
yes eyescreen should be done and your gp or most likely your rumi will arange it
Would of thought whoever prescribed you with the medication should have referred you to an eye specialist for the necessary checks, they are then checked every 12 months, the first test being used as a marker guide for future reference. My Renal consultant referred me straight away when he introduced plaquenil to my list of medications. My eye test results were perfect and will be checked every 12 months which is very reassuring. Hope all goes well, check whether a referral has been made on your behalf- if not you need to request one either via your consultant or even ask your GP to organise one.
If you wear glasses, your normal optician will do it - you need a visual field test (zapping dots on a computer screen). I go to Specsavers and the opticians are all familiar with Plaquenil and lupus (more than many other health professionals). You should definitely get a baseline check before you start treatment.
I was told to book an eye test at the opticians, that's all x
Thanks everyone. I contacted my optician and they were a bit rude so I thought I best check in with you all before trying again.
I RECOMMEND Boots opticians.. plus retinal photo ( they do it for ten pounds)
My rumi did the test before he prescribed it, I also go to spec savers once a year where I get it done free very important you get the eye test before starting.
Hi, i had my eye test at my local tesco, its free for us lupus folk, just inform them off you lupus and they go through everything, they will then put you on their list to have you return every 12 month my optician was fab she was aware of lupus, and the effects of planqinel.
It is ridiculous how much this varies across the country! So some people are paying at their opticians, some people are having it done free because they have lupus, some people are having it done at the hospital. Should Lupus UK not be campaigning for some standardisation here?
I wear glasses and I was due an eye test anyway when I started, so I asked the optician and he didn't want to check it at all, just said "oh it'll be fine". When I insisted, he didn't do any computerised, recordable, baseline test like I wanted, instead he just asked me to look straight ahead and say when I could see his hand approaching from the side! How are they supposed to compare that in a year's time??
Could we have a LUPUS UK leaflet for opticians please!
Newcastle upon Tyne
We do currently have a fact sheet available about the Mouth, Nose and Eyes, which covers how lupus and certain medications can affect the eyes and that you should have regular opticians appointments. It's available to download on our website here - lupusuk.org.uk/images/pdf/1...
With regards to a standardisation of care, this is a more difficult issue as it varies between different areas of the country. Improved and better coordinated patient care is something that the campaigning group National Voices fight for and we are a member organisation contributing towards that.
The leaflet doesn't actually give the optician much information though. In fact it infers that problems with hydroxy and eyes are largely in the past and mentions nothing about regular screening or a baseline check.
I have just been DX with HCQ retinopathy - more about this later (will write a blog entry) but in researching this I came across new (well May 2011) guidelines for testing from the American Academy of Ophthamology. If these had been followed my condition would have been picked up so much earlier before the more serious damage to my eyes had occurred.
I suggest everyone who is on Plaquenil brings this article to the attention of both their Rheumy and optician and yo follow these testing guidelines. aao.org/publications/eyenet...
Note that the maximum dose should be based on your IDEAL weight (at 6.5mg per kg) not your actual weight, so in actual fact height is a better guide. Women under 5ft 7in should be on less than 400mg daily. So it seems I have been overdosing all this time - my max dose should be 360mg.
I have had real issues getting the Rheumatologists and the GP to accept that Plaquenil toxicity has caused my eye problems, thus the delay in dx, simply because it is 'so rare'.
I thought exactly the same, but it was never done. However, when I was due for an eye test I told my optician about the Lupus and she was surprised I wasn't referred sooner, but she has kept a check on everything, and seems to be on the ball with it. I have been having a test every year now and touch wood no problems. If you get no joy from your GP or hospital I suggest booking in yourself to an opticians if only to put your mind at rest. Hope all goes well.
Thanks everyone. Saw my GP today and she said to get checked at the optician. It does seem a bit inconsistent and haphazard. That and prescription charges is going to add up.