Thealoz duo eye drops: Anyone used these with any... - LUPUS UK


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Thealoz duo eye drops


Anyone used these with any success? I have terribly dry eyes which is affecting my vision. I’ve been using carbomer eye gel and hycosan extra with little relief. Also using heated eye mask at night. Really hoping these drops give me a little relief, my eyes are bone dry

6 Replies

I have them on my repeats but I find that, with SFN/Raynauds/EM fingers, they are too much of a faff to open and administer so I stick with my hyloforte and VIT A Pos night ointment (I think this is key) and punctal plugs - which have helped but sometimes a little too much!

Have you seen your optician or eye doc at all if this sicca is worsening? Also do you massage your top and bottom lids after using heated eye mask as this is really important too? xx

GlasgowHen in reply to Hidden

Thanks for your reply.

I actually haven’t been massaging them particularly frequently tbh so from tonight I will do that.

Saw the optician today and had the OCT scan and another one that looks at the entire eyeball. Optician says all that looks fine but major deterioration in dryness. She thinks that is why my vision is a little weird at the moment with the print sort of swaying on the page at times especially if 2 colours present.

I saw my rheumatologist on Friday but forgot to mention all this even when she asked me if I was having my eyes checked!

Anyway optician was very thorough and wants to keep me under review every 6 months which is good

Hidden in reply to GlasgowHen

Wow it certainly sounds like you’ve got a first class optician anyway! My eye consultant seemed rather concerned about the stickiness of my meibomiam gkands last month so I’m being extra vigilant about massaging after daily heated eye mask. He also advised me that it should be hot rather than warm because, like any oil, heating it up is the secret to getting it flowing better and unblocking the inflamed glands. Worth doing this to see if it helps.

I’m seeing my star optician for first time in nearly 2 years on Thursday for OCT and eye test. It’s a bit awkward as he was the one who knows most about Sjögren’s and CTD as has a PhD in this.

However the nearby branch I went to a year ago told me he was having time off so I saw another optician. She was okay but recommended bigger depth varifocals and, as I was suffering terrible headaches I spent a fortune we didn’t have on new frames. My husband and sons still haven't forgiven this as they fell off - nose too narrow for the frames - had a great fall out with their foul receptionist. I couldn’t take anymore having parted with so much money and no refund.

So I ended up seeing my local optician a walk away who said prescription. was wrong too and so I got cheap off the peg varifocals in Glasgow and now switch between the two pairs as the posh ones are transition lenses which I need!

Worse still the sweet young optician down the road gave me stick on pads to keep these ridiculously expensive glasses on my nose for free and a new lanolin eye gel. I’d stick with her now but she isn’t the one who referred me to the hospital eye clinic to begin with and they don’t do the OCT in her small practice. so I’m going back all the way to the old guy up in Blairgowrie as he’s now back.

But how or whether to tell him how badly his own optician business and receptionist treated me last year?! Xx

GlasgowHen in reply to Hidden

Oh gosh that is awkward. I think I would just keep quiet about his colleague but if you ever have to see her again go to your local one instead! I would have been furious as well about those glasses, not cheap at all.

I had an OCT and another scan which I don’t know what it’s called. Apparently there are only 8 machines in Scotland and ridiculously expensive. The OCT just takes a snapshot of the centre of the eye looking at the retina, macula and optic nerve. This new scan takes a wider picture, atleast that is how they explained it if I remember correctly. I had a full field vision check too. We went for it all because of all the medication but in particular the Hydroxychloroquine as I’m on the maximum dose for my weight. I have been having the OCT scans yearly for the last 4 years so she has the comparison each time. She came to the conclusion that the worsening dry eyes are probably a mixture of my ctd and medication.

Thanks for the tip about the temperature of the eye mask. I heated it for longer last night and I think that was actually better. The Thealoz drops seem ok too, a bit more soothing than hycosan which were stinging my eyes.

Sorry to pick your brains further but I know you have a ton of experience with this. When you drive how do you manage with your dry eyes? My tears evaporate so quickly that I really struggle. I have a long distance drive coming up soon and I can’t stop every ten minutes to stick drops in. Do you have a particular ritual before you set off that helps?

Hidden in reply to GlasgowHen

The reason I go all the way to Blairgowrie tomorrow for an optician is partly because of the man but also because of the state of the art technology. In Orkney I used to get photo taken of my eyeball and they could compare it. This is how I learned that my BP is high and that at one point I had a flame haemorrhage near my optic nerve. But the one in this place is like a CT scan of the eyes and shows the width of the optic nerve and is one of the few in Scotland.

Reason I want this OCT done again (it costs about £35) after 3 years is because the ophthalmologist showed his trainee a small dark spot at the back of my eye but didn’t say what it was. I’m sure it was nothing because he said to come back a bit sooner for review - 8 months this time. But it just bothered me a bit afterwards - bearing in mind the potential for invasive Squamous Cell Carcinoma in my lip. So I’m looking for reassurance.

Also the eye doctor was terribly kind and solicitous and asked me how Sjögren’s etc impacted on my life. He wasn’t solicitous like this on either of the previous occasions and this time looked at me slightly like I was on the way out! I’m not used to doctors being so kind and solicitous with me and it’s made me paranoid? But actually he had probably just spotted the long letter from clinical psychology!

I don’t mind at all re driving question - especially bearing in mind that I’ve been driven by you once in person! The truth is I share a car with my husband and he’s the main driver because he hates being driven by anyone else!

When I had my own car up until last summer - when the expense of 2 cars became too great - I would only use the seat warmers but wouldn’t use the air con as it’s so very drying. I only have to use drops every hour or two - if that - since getting punctal plugs fitted 3 years ago . In fact the Blairgowrie guy said once that some people feel their eye dryness more than others and due to the neuropathy in my face and around my eyes I seem to feel it far less acutely nowadays. The extent of the dryness only makes itself known when my vision goes a bit blurry.

So if I was long driving on my own I’d probably put some Artelac or Vit A pos in an hour or so before embarking as it works in a more sustained way. And I’d have heat warmer or heat only blowing down on my feet which are the part of me that is most affected my Raynaud’s. And eye drops opened, all ready to empty into eyes if needed. The blurring of drops for me is nothing compared to the spontaneous outpouring I get when I step out into cold nowadays - see my last post for more!

Also I have dark glasses for driving and never drive at night because I have always had night blindness same as one of my sisters. When the boys were young I ended up with car being dragged out of several ditches and knocked down one of their friend’s garden walls so I learnt about this the hard way lol!!

Short answer is that I never do long drives myself now - only as passenger - which means I can admin as much Hyloforte as often as I wish to! Xx

The OCT scan images are fantastic aren’t they? I would also travel further afield to get it done.

Thanks for you ideas about the driving. I remember our little driving trip too, we certainly tried to put the world to rights that day! I didnt have crispy eye balls then...

Good idea about the heating in the car. Guess I will just have to stop a lot and do whatever I can. It is remarkably irritating and sore.

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