Dry eye syndrome: Hi everyone, my first post, I... - PMRGCAuk

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Dry eye syndrome

Croft9232 profile image
27 Replies

Hi everyone, my first post, I have been reading all your posts,replies ,avidly since I was diagnosed with PMR some 4 weeks ago.I think I had it for quite a time before seeing my GP.After high inflammatory markers she prescribed 15 mg Pred which worked within 12 hours ! Last week after 3 weeks and reduced inflammation markers lowered to 12,5 mg. After a few days of starting Pred I developed dry eye, a pricking sensation followed by blurred vision. I have tried numerous different drops/ gels to no effect.I did mention to the GP but she wasn’t overly concerned .I did read that dry eye is a symptom of Rheumatoid Arthritis which I do not have. It seems though an inflammation ?? Anyone have any thoughts or has had it?

Many thanks,

Margaret.

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27 Replies
Snowy12 profile image
Snowy12

Hi, I have terrible tired dry eyes. Since meeting some lovely ladies after the talk by Prof Dasgupta in Cardiff on 24th May I have put it down to the pred as they advised me that they have the same.

I’ve been on high dose since diagnosis with GCA 6 weeks ago started on 60mg down to 45mg at present. I’ve had Clinitas Gel from GP it’s great and helps for a little while but my eyes remain tired all the time. I’ve had my eyes checked at opticians twice and given the all clear. I think it’s just another thing we have to put up with unfortunately. Hope you feel better soon.

Croft9232 profile image
Croft9232 in reply to Snowy12

Thanks for your reply, its blurred vision all the time for me...I had a few days last wk of stabbing pain behind an ear and sensitive to touch the area but not constantly..I see you have GCA may I ask what your symptoms were?

Snowy12 profile image
Snowy12 in reply to Croft9232

Hi yes, my eyes are blurry I’ve had to stop a couple of tubes writing this reply. I had a strange headache on the right side of my head which I ignored for a couple of weeks. Then I got terrible sensitivity to my scalp on the same side. It was only when this got so bad that I couldn’t even touch my hair and I was falling asleep mid sentence that my husband decided I needed to go to the out of hours GP. I telephoned 111 who said it sounds like Trigeminal neuralgia. I looked this up and didn’t agree as it describes facial pain and mine was all in my temple and side of head above my right ear area. Anyway I was lucky that the doctor recognised my symptoms and started me on 60mg straight away.

I am no expert but I think you need to see an optician immediately if you have pain especially in one eye.

Longtimer profile image
Longtimer

I have the same and have tried many eye drops etc, the only thing that eases dry my eyes/Bletharitis is Blink intense eye drops and bathing my eyes with hot water as soon as I get up....hope this helps...

Thelmarina profile image
Thelmarina in reply to Longtimer

My optician advises a warm eye mask for ten minutes, then cleansing wipes for Blepharitis, used to massage the sockets and wipe the lower and upper insides of the eye. Then I use Thealoz Duo for dry eye. Quite a lot of gunk came out the first time I did this. Now I just use the wipes and eye drops unless the eyes get especially bleary.

Longtimer profile image
Longtimer in reply to Thelmarina

Thanks for that, we have to find what suits us,trial and error.....

Thelmarina profile image
Thelmarina in reply to Longtimer

Yes, I’d rather the eye thing was due to Pred than the disease but am not too hopeful..😀

SheffieldJane profile image
SheffieldJane

I do see my very well equipped Optician several times a year. I think it is very important that we look after our eyes with these conditions. My dry eyes are helped by Thealoz Duo drops. I get them on prescription in the UK. We need to be on the alert for cataracts and other conditions that can be picked up with various specialist equipment for looking at the back of the eye and testing for glaucoma and peripheral vision. I am an avid reader and experienced very unpleasant eye strain earlier on in my PMR. Audio books are one answer. Wishing you a warm welcome to the forum. Of course GCA is something we all have to be alert for.

PMRpro profile image
PMRproAmbassador

Dry eye is part of many a/i disorders not just RA. It may be worth speaking to your optician/optometrist about it to be sure it isn't anything besides the pred which it could be. You do need to keep using the drops several times a day.

piglette profile image
piglette

I had exactly the same symptoms at 15mg. They did go away when I reduced though. My GP gave me eye medication which did not work. It seemed I was actually allergic to it!

PMRpro profile image
PMRproAmbassador in reply to piglette

The preservatives?

piglette profile image
piglette in reply to PMRpro

Something beginning with L if I remember. I thought it was lanolin, but that sounds wrong!

lfu2 profile image
lfu2 in reply to piglette

I think you may mean Losartan. I have had the same issue with the preservatives after 3 years. It began stinging in one eye. I have now been prescribed preservative free Losartan and everything is right again.

PMRpro profile image
PMRproAmbassador in reply to lfu2

Losartan is an oral blood pressure medication.

Thelmarina profile image
Thelmarina in reply to PMRpro

😂

lfu2 profile image
lfu2 in reply to PMRpro

I have been going through some old posts and I came across this one.... a definite foot in mouth job. The 'L' I was after is Latanoprost. An age issue!

Linny3 profile image
Linny3

Yes I have many eye issues while using prednisone. I doubt it is inflammation as the pred. would take care of it. I assume.

The best thing I have done is use the nighttime eye gel religiously. It helps a lot with the dry eye but not the vision problem. Can't find anything that helps that. Have been checked many times by eye dr. Eyes are healthy and normal. She wouldn't think they were so normal if she had to look out of them. :)

Good Luck in figuring it out.

SuziCutie profile image
SuziCutie

Celluvisc eye drops. Preservative free. On prescription from dr. Had dry eye syndrome years before GCA/PMR came along!!

Croft9232 profile image
Croft9232

Thanks for your replies, I am not alone it seems..I have an appointment next week with my optician who also works at a local hospital in some capacity...

I am using the drops/ gel many times a day and today invested in a mask that you microwave and place over the eyes, bought from the opticians.

Also starting flax oil capsules although they may take a few weeks to have any effect, willing to try them though.

Blearyeyed profile image
Blearyeyed

I have dry eye syndrome as part of another condition and it is something that your GP should take seriously.

Have you actually been diagnosed with it ?

Your GP should prescribe you some better eye drops .

The first line courses are gel tears and carmellose solution drops.

When you put drops in don't add them right at the corner as they can be lost in the tear ducts, put it more centrally with your head back and slowly close your eye then slowly move your eyeball around for about a minute to allow the drops to really cover the eyeball.

When not using drops slow blinking helps or a cool spritz of water sprayed over closed lids.

These can be used a number of times during the day as required.

You also need to reduce things that dry your eyes more , like screen time or make sure that you aren't sitting for long periods in a dry atmosphere.

Sunglasses help outside to protect you from wind as well as sun and things like pollen that make it worse.

Don't use any chemical products on your eye area like moisturisers or make ups or drying facial wipes.

Reducing dry eye comes from the inside too , the inflammation and medications don't help so you need to make sure you drink alot of things like mineral water and green tea .

( You can actually put the bags of the unflavoured sort in the fridge and place them on your eyes for 15 mins in an evening for added relief).

Increase the vitamin A , D, E and C in your diet with foods like eggs , oily fish , green vegetables and berries.

If it continues and affects your vision alot ask to be referred to an Opthamologist as you will require a Schirmer test to diagnose Dry Eye Syndrome.

If the original drops don't work there are better ones for people with the diagnosed condition.

I have little capsules of more biologically designed drops called Celluvist /Celluvisc , they are very expensive so GPs tend not to offer them and are reluctant to prescribe but they are excellent.

Dry Eye can also be a problem not just of tears but the oils on the eyelid. The lack of claggy nature of oils can add to the blurred vision. It's often because of lack of retinol ( animal VitA production).

I have a night time gel ointment , also very good , called Vitapos A . It is worth getting a prescription of this too.

Dry Eye is a pain and it should be taken more seriously , especially if it is possible that you have it as a side effect of medication you need to take.

Getting it in check should be of importance to your GP because it prevents the possibility of surface eye damage and eye infections . Prevention is better than cure.

Hope it gets better soon.

Koalajane profile image
Koalajane in reply to Blearyeyed

Eye drops in my area are not prescribed, you have to buy them yourself! My husband used to use lacrilube for his eyes and the doctors will not now prescribe him anything so he has to buy them himself. The same with viscotears. His optician was shocked that he can no longer get them on prescription

Blearyeyed profile image
Blearyeyed in reply to Koalajane

I think it is unfortunately another one of those things that you need to argue the point on.

My original eye drops were not prescribed until the Dry Eye Syndrome was confirmed by the Opthamologist and they wrote to the GP telling them what I needed to be prescribed and how often. The GP tried to change the prescription three times by sending a cheaper option which didn't work.

They eventually learnt , as they have with other medications that I just take it back and request my prescribed medication , so therefore not saving themselves money as the replacements have to be thrown away.

I do get very frustrated with constantly have to keep at their heels to get the right service though , it feels like a full time job that I never wanted and don't get paid for.

Good luck x

Koalajane profile image
Koalajane in reply to Blearyeyed

My husband has argued about it. It is the Shrewsbury CGC who have refused it. Strangely we can’t get them on prescription in Shrewsbury but could if we lived up the road in Telford

Blearyeyed profile image
Blearyeyed in reply to Koalajane

The wonderful postcode lottery at work again!😣😣😣😣

Croft9232 profile image
Croft9232 in reply to Blearyeyed

Thank you, all so helpful, will push for further tests next week when I see the GP and will keep up a daily regime with the prescibed drops and flax seed oil eye mask.

Ciar profile image
Ciar

I also have been struggling with very dry eyes after having eye surgery several months ago. (I’ve had PMR for about 3 years). It’s so bad that my eyes are blurry and painful most of the time. Most eye drops just seem to make matters worse. I have some success with celuvisc and hot compresses, but I continue to have difficult problems. When it gets really bad I get corneal erosions and the white part of my eye, the conjunctiva, gets loose and baggy. Dry eye can be very hard to cope with. I hope you have better luck with treatment than I have.

Croft9232 profile image
Croft9232 in reply to Ciar

That all sounds so painful and must be difficult. Our eyes are so precious, I have worn glasses since I was 4 years old and they ( my eyes) have been a worry to me on and off for a long time.

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