new to the forum

[chads38]

Hi,
I am a 51 year old female from the uk.
In 2008 I had a severe case of iritis in both eyes and believe that the steroid treatment I had to treat the iritis caused my dry eye problem.
The opthamologist told me to buy hypromelllose over the counter and I did this for about 18 months until the lady in the chemist told me that the preservatives could make my dry eye worse and advised me to visit my dr.
My dr prescribed carmize (carmellose sodium) 0.5% and I used this for about a year until it stopped providing enough relief, so I asked for a stronger one and he prescribed the 1% strength which I now need to use every 2-3 hours.
Early in 2012 I started to suffer with blepharitis and I believe MGD (I haven't had a diagnosis) I spent £200 on some Blephasteam goggles and cleaned my eyelid margins with baby shampoo before switching to Blephasol as I found the shampoo too harsh, I also tried chloramphenical ointment which helped a little (my dr had prescribed fusidic acid but I couldn't use it as it made my eyes very sore)
My eyelids were extremely red and swollen and I looked like Gollum out of Lord of the Rings!
Apart from going to work I avoided going out where possible as people would do a double take as I suppose I looked like a druggie.and my social life is non existant, I cried every day which certainly didn't help and think I was on the verge of having a breakdown
In march this year, after researching on here as well as various other sites, I went to my dr and broke down and in between sobs asked if I could try Doxycycline as it is meant to reduce inflammation and increase oil production, so I have been on this for about 6 weeks now and my eyes have improved slightly and I have another 6 weeks to go.
I have bought various drops to try for dry eye but non seem to provide much relief, last week I bought 2 new drops to try, one is an emulsion eyedrop called Emustil which contains soya bean oil I have been trying this for 2 days so far but find it makes my eyes burn and only provides relief for a couple of hours, the other one is called Theratears and I have high hopes for this as it is meant to address the cause of dry eye rather than just provide lubrication so I will let you know how I get on soon.
Thanks for listening
Dawn

[Faith1989]

I am unsure whether u can get Restasis from England but this has helped a little in treating my MGD, also Steriods three times per week (more if I'm having a flare). Also if I skip a compress or two, my eyes flare again. Theratears is the best tear in my opinion. If I use it to much, my eyes hurt though so i only use it as needed. Umm doxy took me at least two months for any effect so hang in there. I've had some bad flares, then some days are normal..

If u wanna talk let me know. I understand what u are going through. Welcome!

[lizzyk]

Cyclosporine (which i think is similar to Restasis) is available in UK but can only be prescribed by a Dr at an eye hospital as far as i know. You could ask your GP to refer if you feel you are not getting the relief you need. Unfortunately there is no "one size fits all" cure. My regime is as follows and might be worth a try!! I wash my hair with Head & Shoulders every day, i clean my eyes in the morning with suppranette wipes ( i cut them into 4 peices as they are quite big)- available from Boots then I use hylo tears as often as needed - they are available from GP, i also use one of the eye bags that you heat in the microwave in the eve (or sometimes twice a day), followed by massage and then drops. I take omega 3,6,9 capsules from Holland & Barrett and flaxseed powder (also from H & B) which i sprinkle on cereal. At the mo i am on steroid drops but only for 2 weeks - cant say i've noticed much difference as yet though, which might be due to the fact that i have no plugs at the mo. I cannot use ointment on my eyes - it seems to make them worse, when i had a flare up the doxy did help but you may need to take it for up to 6 months and when you decide to come of it decrease the dose gradually as i did. Hopefully you will find some relief soon If you want anymore info then please message me

[lizzyk]

I should mention that i also had Lipiflow treatment a couple of months ago and it has made no difference at all for me. I also hope to have some new plugs fitted top and bottom as my last ones fell out - maybe that is something you could consider to help with the dryness?

[littlemermaid]

duplicate ~sorry

[littlemermaid]

Moorfields Eye Hospital ophthalmic formulary http://www.moorfields.nhs.uk/Publica...rces/Medicines All meds easily available NHS through anyone who has the * to prescribe them and knows what they're doing, including various cyclosporine and Restasis formulations, plus a load of preservative-free alternative drops.

http://www.dryeyesmedical.com/ Moorfields's Dry Eyes Medical website. Lovely, thank you Moorfields.

They do keep updating their website information so worth checking on current treatment options. The research summaries are especially useful.

http://www.openeyes.org.uk/ Moorfields pioneering medical records system for ophthalmology, in case anyone in the trade is interested. I actually cried with joy and relief when I saw this.

Chads ~ are your eye docs looking after you? have you got follow-up in a specialist eye clinic in a hospital? if not, and the GP doesn't know anything about eyes, get a high street optometrist from one of the big chains to do an assessment and refer you to a hospital cornea consultant. This mustn't get worse than it is x

[chads38]

Hi everyone, thanks for your concern.
I am not under any medical care as, apart from my G.P who prescribed the fusidic acid & Doxy for me ( and that was because of my insistence) he never mentioned going back for a follow up appointment just said good luck.

no one seems to care, when I had my eye test at the end of last year the optician said my blepharitis wasn't too bad and wondered if it might be an allergy, I told him that I tried taking oral anti histamines for 5 days but they never made any difference, so he ruled out an allergy.
I suppose at least the Doxy seems to have reduced the horrendous burning in my upper and lower eyelids and I am a little bit happier now although I still prefer not to go out unless I have to. I have been taking 100mg for 4 weeks and am now on 50mg for 8 weeks
I have never tried restasis and to be honest I have read somewhere that it is toxic so dont really want to use that.
I do use 1% hydrocortisone ointment on my lids occassionally and it helps a little with the swelling and redness , I had to lie to the chemist and say it was for my dads eczema as I knew they wouldn't sell me it for use on my eyelids.
Lizzy, you mention the plugs , I have never really thought about them as my eyes are very watery anyway and quite often my tears run down my cheeks, would the plugs not make this worse? after researching I think my dry eyes are due to lack of oily covering rather than lack of tears.
I have stopped the Emustil eyedrop after 2 days as I found it didnt really help the dryness and it was also difficult to use, most times I ended up with lots of liquid in my eye rather than 1 drop.
Today I have started on the Theratears gel which I purchased from Mathesons optometrists here in the uk, I am keeping my fingers crossed they will improve my dry eye.

[chads38]

I forgot to mention that I have also been on a low dose oestrogen only patch for the last few months to help me cope with hot flushes, depending on what you read some people seem to think oestrogen makes dry eye worse.
has anyone else had problems with HRT? I am only on 37.5 mg estradot which is the lowest amount that I find controls my hot flushes.
I cant say that it has made my eyes any better or worse and at least it leaves me with one thing less to cope with.

[littlemermaid]

I do use 1% hydrocortisone ointment on my lids occassionally and it helps a little with the swelling and redness , I had to lie to the chemist and say it was for my dads eczema as I knew they wouldn't sell me it for use on my eyelids.

Chads, If you want to use steroid round your eyes for blepharitis, there are the ophthalmic formulations without preservatives. I'm sure you've Googled the risks of this hydrocortisone strength 'Intensive or prolonged application of corticosteroids to the eye may lead to thinning of the cornea (front part of the eyeball), glaucoma, damage to the optic nerve, development of eye infections, or the formation of cataracts. Your eye specialist will want you to have regular eye check-ups to monitor for these types of side effects if you use this medicine for longer than a week.' Read more: http://www.netdoctor.co.uk/eyes/medi...#ixzz2SLNcexc7

Not being able to go out is serious. Do you want to have an Ophthalmologist doctor help you? We sure are entitled on the NHS. If you are shopping at Andrew Matheson and live near, he could sort this out for you.

http://www.nhs.uk/conditions/Blephar...roduction.aspx
'Your GP may refer you to an ophthalmologist (a medical doctor who specialises in diagnosing and treating eye conditions) if:
•your symptoms are particularly severe
•your symptoms do not improve after treatment
•your eyes are painful
•your vision is blurred
•you have experienced any loss of vision
The ophthalmologist will carry out further tests to make sure that your symptoms are not being caused by another condition, such as a more serious type of eye infection.'

GPs are only allowed to tinker with blepharitis and red eye for 3m max (NICE guidelines), then if unresolved they have to refer to hospital eye clinic. Any probs, try another GP in the practice, or another optician, or turn up at A&E hospital Eye Clinic with pain and photophobia. Tell them you've had to use hydrocortisone 1% for swollen eyelids and you're worried about drug reaction. These are keywords to get access to A&E Eye Clinic. In our experience these days, go to the largest hospital you can get to, rather than a local hospital emergency eye clinic on rotation.

If you want your eye history on the iritis, you can request it from Medical Records. GP can print off past consultant letters if you don't have them. You can ask an anterior segment Ophthalmology consultant for help with this recurrence of eye inflammation, which is what blepharitis and dry eye brings, and previous history of iritis gets you seen very fast http://www.ouh.nhs.uk/patient-guide/...0811iritis.pdf

I don't think they are looking after your eyes very well with your history of iritis. Are we sure this GP and optician even know what iritis is? Doubt it. What do you think? x

[lizzyk]

It can feel like you're banging your head against a brick wall at times and eye probs can certainly get you down. I agree with little mermaid though and a referral to a specialist is good advice, i also agree that drastic measures might be called for if you feel you're getting nowhere with your GP, sometimes creating a stink is the only way to get results! Can i ask where in UK are you?

[chads38]

Arghh, I just typed a long reply but then I couldn't send it as it said I wasn't logged in, and once I logged on again my reply has disappeared, will it have gone for good?

[chads38]

I ony use steroid cream a couple of days at a time, having read on the NHS site that blepharitis is not a serious condition what could an opthamologist do that I am not already doing?

[chads38]

I live in Kendal, Cumbria and my nearest opthamology unit is 20 miles away, as I dont drive I wouldn't want to just turn up, I will wait until I have finished the doxy to see if it works then go back to my GP

[littlemermaid]

Hi Chads, If it was me I would try VisionExpress for an eye check and advice, especially with your iritis history and the steroid use I would get eye pressure (IOP) and vision monitoring.

My grandmother's family is from Solway coast, been to Kendal many times, so I understand what you're saying about hospitals. From the internet it looks like there's some money for outreach to Westmoreland General which the GP could help you access http://www.uhmb.nhs.uk/media-centre/...ology-service/ if you want them.

In our county, we have to phone ahead to next county regional hospital A&E Eye Clinic for an appointment so if you ever need to do that, say you had iritis to get in.

Our GP practice is a non-starter on eyes and doesn't have an ophthalmoscope let alone manage eye conditions. Maybe yours is better. High street optometrists have been the best help. Any medical optometrist recently trained has some knowledge of common eye conditions and would make an attempt at managing dry eye, then refer on for hospital co-care if that didn't work.

Not good to be housebound. There are good low-cost wraparound sunglasses in eg Boots, M&S, at last.

[chads38]

Thanks littlemermaid for the advice ,
once again I have typed a long reply but is has disappeared, so will keep it short