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Date: 25.04.2014
From: teresa

Subject: severe dry eyes

Hy all anyone got a quickfix for relief from dry eyes been suffering for about ten days. now tried all the usual remedies my own drops not doing much to help been to gp was given cream told to come back in two weeks been to chemist was given hay fever drops .no good went to eyehospital and had plugs inserted not much help so far its driving me to distraction I have r/a and o/a any advice greatly appreciated thank you.
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Date: 25.04.2014
From: Colin W

Subject: Re: severe dry eyes

hi teresa , not sure what you call severe dry eyes as some of us with RA has totaly dry eyes , + other problems with our eyes like scleritis


I use HYPROMELLOSE 0.3% Eye Drops 4 or 5 times a day & Viscotears at night time on prescription , its cause by inflammation around the tear ducts & they may end up putting blotting pager in your eyes to see if they are dry

one thing recommended is Hycosan which is preservitive free but not sure you can get it on prescription but its not cheap
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Date: 25.04.2014
From: bsk

Subject: Re: severe dry eyes

I use Hylo tear and Systane. But I've also had Optive, hypromellose (which was useless for me), celluvisc, carmellose and Vitapos. Everytime I go to Moorfields they prescribe a different eye drop. I think it takes a while to find what suits you.
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Date: 26.04.2014
From: Teresa

Subject: Re: severe dry eyes

Hi Colin and bsk
Thanks for replying I was diagnosed many years ago with dry eye syndrome with the blotting paper routine.Since then I have had various treatments I.e drops and creams, even compresses.The one I have been on for some years now is called Hy Lo Forte i was put on that by the opthalmic consultant ive had a few occasions were my eyes have been dry and sore but not as bad as this I feel like I do when I have an r/a flare up I went to the a and e dpt at the eye hospital and he put silicone plugs into my eyes not a very pleasent experience but they hav, nt realy helped me.He then said I had Sjorgens desease I asked for steroid dropsto relieve the soreness and irritation but he didnt advice them.I dont know whether to ring my rheumy nurse to see if they can help.
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Date: 26.04.2014
From: Bsk

Subject: Re: severe dry eyes

The plugs in your eyes is a diagnostic procedure to see if you have blocked ducts. It doesn't treat the dry eyes. I've just been given a two month course of steroid eye drops. I think you probably need to just use a lot of drops and try and get a referral to a consultant. They don't specialise in A&E and they didn't spot my eye condition in spite of 4 trips!
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Date: 26.04.2014
From: Teresa

Subject: Re: severe dry eyes

Thanks for your advice Bsk
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Date: 27.04.2014
From: Colin W

Subject: Re: severe dry eyes

hi Teresa, those of us with RA have pretty much the same as Sjorgens , you said your eyes been playing up for last ten days , would go back to your GP , you can develop other problems with your eyes like Episcleritis , scleritis & Uveitis , the first of these tends to last a few days then clear but the other two will need treating or will damage your sight & your eyes will look very red & sore , its something that is caused by RA & treated with steriod drops & anti-inflammatory drops
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Date: 27.04.2014
From: Eve

Subject: Re: severe dry eyes

I'm the same, really dry eyes and a dry mouth too and have had problems like episcleritis. Getting your RA under control should help a bit.

I have tried hyloforte and celuvisc eyedrops and put lacrilube in every evening. I try and keep well hydrated too and avoid things which might make them drier or more sore like wind or bright light - my eyes are really sensitive so I wear a hat with a peak whenever I'm outside and find sunglasses a big help.

I was prescribed pilocarpine for my mouth as it was getting so dry, it has really helped and seems to have helped my eyes a bit too. I need to take it with lots of water (or strange side effects) and watch when I take it before bed as I sometimes end up drooling a bit if I'm sleeping on my side, probably not used to actually having an un-dry mouth - how glamorous! They have been absolutely fantastic though!

Hydroxychloroquine can be used for Sjogrens to help too. I was on it but then started getting really blurred vision though it turned out that it was the RA making my eyes so dry rather than the drug.

I also have allergies so have eyedrops for that too and take an antihistamine every day as the allergies make it worse. I know things to avoid now too - horses being one of the worst triggers for me, really suffer if I haven't had an antihistamine before going near one.
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Date: 29.04.2014
From: teresa

Subject: Re: severe dry eyes

Hi Colin
I went back to my GP she sent me. Back to the eye hospital with a letter sugesting steroid drops.I still didn't get them only celluvisc drops and optive plus drops also a cream to use at night.They did say that the back of my eye was in a bad way and that the. Glands that produce the tears are totally knackered.So they took swabs of my eyes nose and mouth also some bloods to check for possible causes he did say it is dry eye syndrome but it is very severe so maybe there is something triggering it.Saddly as we know there is no cure but to just get some relief would make life more tolerable I'm just waiting for 2to3weeks now to get the test results.Feeling sorry for myself right now tho. But thanks for your input.
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Date: 29.04.2014
From: Colin W

Subject: Re: severe dry eyes

teresa , google scleritis & Uveitis & see if your eyes look like any of these , I use Ketorolac eye drops (Acular)its one of the Non-steroidal anti-inflammatory eye drops & works well

one thing your GP could give you is steriods & see if that helps clear it , had some with scleritis , other treatment like a good biologic ie: tocilizumab would help control your RA
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Date: 29.04.2014
From: bsk

Subject: Re: severe dry eyes

They don't give you steroid drops, Colin, unless you have inflammation, as they can cause glaucoma. Maybe that's why they wouldn't prescribe them. Most GPs won't prescribe unless they are instructed to by a specialist. This is what I know about steroid drops!
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Date: 30.04.2014
From: Linda

Subject: Re: severe dry eyes

Sjogren's syndrome is a halfway house between RA and Lupus. Dry eyes, dry mouth. It was one of the symptoms I had when I was diagnosed. Mine is mild enough to not need eye drops, but I do need to drink a lot of water.

I think you can also use a boiled water eyebath for relief.
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Date: 30.04.2014
From: teresa

Subject: Re: severe dry eyes

Thanks everyone for all your advice and comments I was told bsk that was the reason they wouldn't give me the steroids I'm just having to persevere at the moment the new drops and cream I was given on Monday have made no difference so far .I feel like I haven't had a decent sleepfor ages I'm worn out you wouldn't think it could be so debilitating.
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Date: 30.04.2014
From: Sean

Subject: Re: severe dry eyes

My eyes react to Cows Milk protein (casein) - I get inflammation then dryness then itchy lids and eyelashes loosening.

A few interesting links (a medical study - and other people discussing benefits they have found)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440347/

http://www.city-data.com/forum/diet-weight-loss/357803-diet-sjogrens-syndrome.html
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Date: 30.04.2014
From: bsk

Subject: Re: severe dry eyes

Blimey, Sean. You must spend all your time on the internet.
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Date: 01.05.2014
From: Sean

Subject: Re: severe dry eyes

No bsk - it only takes 2 minutes! If you know what you looking for... I'm often surprised that these medical studies are there .... they nearly always end with "warrants more investigation..." but often the funding to do more investigation isn't forthcoming.
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Date: 01.05.2014
From: marlene

Subject: Re: severe dry eyes

Surely if it warrants more investigation then it shouldn't be trusted 100%. Just a thought.
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Date: 01.05.2014
From: Sean

Subject: Re: severe dry eyes

Your right Marlene - we do have a choice to ignore them if we dont trust it.

But reading the study it does appear that many of these Sjogrens patients were reacting to Gluten and CM (Cows Milk).

Venus Williams has adopted a Vegan diet (thus giving up cows milk) for her Sjogrens

A quick further google finds that loads of forums are full of people discussiing Cow Dairy free diet for Sjogrens - with many of them having success.

I've just joined Inspire forums.

http://www.inspire.com/groups/autoimmune-diseases/discussion/sjogrens-and-dairy-products/
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Date: 01.05.2014
From: bsk

Subject: Re: severe dry eyes

Interesting about diet for Sjogrens, if you have it.
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