Dry Eyes

[Elor]

After two and a half years with PMR I am now on 7 mg of pred but have just recently developed extremely dry eyes. I wake up in the middle of the night with a feeling that my eyeballs are going to explode, ok maybe that's a tad dramatic, but they are really sore! They also secrete a horrible "gloop" which makes my eyelashes stick together. I've had to abandon my contacts. I use Hycosan Extra eyedrops and the doctor prescribed Xailin cream but they don't appear to be working. I'm wondering if the heated eyemask recommended by the optician is such a good idea. Any advice would be greatly appreciated.

[DorsetLady PMRGCAuk volunteer]

Hi Here’s some advice given to me by a members many years ago with same issue - have copied her advice word for word -

“I found out a lot about dry eye when I had laser surgery and have had a lot of support from my clinic to help deal with it. Usually it is caused by blepharitis, which is an inflammation of the eyelids, where many of the glands are that produce tears. And if we already have inflammation elsewhere in our bodies, why should we not have it in our eyelids too? OK, so far so simple.

But tears are a good deal more complicated than I thought. There are actually three layers to our eye lubrication aka tears. The first layer is a mucoid layer that is produced by glands around the epithelium, which is the membrane covering the eyeball. This forms a sticky base onto which a watery layer sits. This is the watery tears produced by our 'tear ducts'. But in healthy eyes there is also a lipid or fatty layer that sits like a slick of oil on top of the tears and stops them from evaporating. This oily layer is secreted by glands at the edges of the eyelids. These often get gunged up (with dead skin cells, makeup etc) and the oily stuff solidifies like butter and blocks the ducts. So then in sun and wind, the tears evaporate and the tear ducts go into overdrive producing more watery tears.

The eye clinic encouraged me to adopt a cleansing routing involving cotton wool pads and Johnson's baby shampoo, a drop per eye on a warm damp cotton pad. I kid you not. Actually, it doesn't sting at all. Then use the pad to make quite a firm sweep across the eyelid from one side to another, or use a clean fingertip, massaging the eyelid to help unblock those glands. Another really effective treatment, to use in conjunction with this routine, is to get a clean facecloth wrung out in water as hot as you can bear, fold it into a pad and lay it over your closed eyes for a few minutes. The heat actually helps the buttery goo to melt and be released as you do the cleanse/massage routine.

I have become a great fan of the hot facecloth routine and do the shampoo thing at least twice a week. And the great thing about it is that it is cheap as chips.”

But do keep up the Hycosan Extra eye drops - last time I had regular eye test mine were a bit inflamed (no longer due to GCA ) and optometrist recommended them. His advice- use at least 4 times a day, more if required.

[Elor in reply to DorsetLady]

Thanks so much, that is really informative. Who would have thought of using baby shampoo? Definitely wiorth a try! By the way, I didn’t intend to post that enormous pic! I thought I was adding to my profile!

[DorsetLady PMRGCAuk volunteer in reply to Elor]

No problem - it’s a very good one - but you can replace your profile avatar with it - just go into profile and edit.

[Koalajane in reply to Elor]

My husband used to use the baby shampoo but recently an optician told him it wasn’t necessary as hot water was good enough

[TheMoaningViolet in reply to Elor]

I used camomile tea to clean my eyes when I had chalazia linked to a spot of blepharitis back in the spring. I also used heated mask I got from Amazon, in the evenings, on the lowest setting. I found it quite relaxing. My eyes are still a bit dry, but I just use eye drops morning and evening now and that works well. The drops are use are called VisuXL.

[Maudie19 in reply to Elor]

I already had blepharitis before PMR and it hasn't gone any worse, if anything better as I use the procedures mentioned. I find the hot eye masks good - just don't overheat in the microwave as it could burn your lids.

[Sharitone]

I don't know about heated eye masks, but I can say that I was using an ordinary eye mask to keep out the light in the summer, and that made my eyes/eyelids sore. Presumably something to do with cutting out the fresh air!

[Sharitone]

Nice pic, by the way!

[Elor in reply to Sharitone]

Embarrassing, I thought I was putting it on my profile!

[Kendrew in reply to Elor]

It's lovely.

[PMRpro Ambassador]

I developed dry eyes with PMR and had an utterly hellish few months trying to reconcile contact lenses and that. I gave up! It is not uncommon in autoimmune disorders and some people even develop an autoimmune condition called Sjoegrens.

Itls a case of identifying what suits you - some like drops, I like a liposomal spray you use on your closed eyes. The heated masks help some people - as DL's reply explains - but persistence and consistency with eyecare, cleaning eyelids and so on, is important.

[Elor in reply to PMRpro]

Yes, I’ve decided to give the contacts a break for a while I like the idea of that spray.

[Whitner in reply to Elor]

Yes I had dry eyes and dry mouth, both really irritating! For some unknown reason, both have gone away. I'm still on 5 mg of prednisone but I am no longer bothered by dry eyes or dry mouth, I'm guessing it was Sjoegrens and just ran it's course. Hopefully yours will too.

[Koalajane]

I use the heated eye mask and have found it helps. I use the eye doctor one

[Elor in reply to Koalajane]

Mine is the type you put in the microwave

[Koalajane in reply to Elor]

Yes mine goes in the microwave

[humlies in reply to Elor]

Yes, I use the type you put in the microwave; I used to use Blephotears, but now I don't bother.

[SheffieldJane]

I have dry eyes and recognise the “ exploding eye” description, they feel like they are going to burst. I have bought a heated eye mask, it relieved that awful sensation in about 10 minutes. Mine plugs into one of those power packs and heats up instantly. I use Thealoz Duo eyedrops and Carbomer Eye Gel and Blepharitis eye wipes.I share your symptoms and unfortunately have had these symptoms for over a year. I hope it goes when the autoimmune disease and immunosuppressant drugs are finished.

[Elor]

Oh I’m sorry you’ve had this so long. I hope it comes to an end soon for you. It really helps to know that it’s not just me

[Tahiri]

I’m down to 3mg Prednisilone, but have had Blepharitis and now reduced production of saliva for the past year. I used the mask heated for 30 seconds in the microwave, followed by eyelid wipes and lastly the eye drops, but saw little improvement. I read somewhere about spraying the lids with colloidal silver spray before doing the usual massage, and my eyes have been less swollen, and look almost normal. My Dr prescribed ‘Hylo night’ cream for use at bedtime. This cream has worked for me, in banishing the sticky residue on my lashes each morning. Sometimes I couldn’t see until this was removed. I see considerable improvement with this routine. For the saliva problem, which can cause tooth decay, I use sprayed artificial saliva, which is not as unpleasant to use as it sounds. Try to use preservative free eye drops if possible. I hope this helps with this unsightly condition, as we have enough to deal with between GCA and PMR. Best wishes, Tahiri.

[Elor in reply to Tahiri]

Thank you so much for your detailed reply. So helpful.

[Daffodilia]

I have used eye mask but prefer Thealoz Duo drops - my eyes were like burning coals at night but use drops 4 times a day and it helps

[Elor in reply to Daffodilia]

Thanks, I hadn’t heard of those drops

[prunus]

I have a similar problem and have found a few minutes spent with a warm flannel on my eyes in the shower in the morning very beneficial. I also read that it is good to blink to help lubrication.

[Elor in reply to prunus]

Thanks so much, I love the flannel in the shower idea. I’m all for multitasking!

[Slosh]

I too have developed dry eyes in the last few months. Horrible and sore. Was given pretty much the same advice. But optometrist last week said that they are seeing a huge rise in dry eyes due to mask wearing

[Elor in reply to Slosh]

Oh that’s interesting, I’m all for wearing a mask but since I’ve ditched my contacts I find my glasses steam up with the mask and I can’t see a thing!

[Marijo1951]

I've had this problem for at least a couple of years. I tried a (very expensive) eye cleanser recommended by an optician but it made my eyes sting. However somebody on this forum said that an optician had recommended mycellar water to cleanse the eyes, so I tried that - easy as I already used Garnier Mycellar Water as a facial cleanser. It works really well at cleaning out the gunge without stinging at all.

[Elor in reply to Marijo1951]

Thanks, I’ll give that a try

[borednow]

Micellar water (Boots or any chemist stock it). Recommended by optician when diagnosed with Blepharitis. Problem solved. The relief was bliss. Good luck.

[Elor]

Thanks for the recommendation, I’m sure that would be a lot less expensive than the one I’m using at the moment. Great!

[O-Wise-One]

I have had this horrible complaint for the last 2-3 months but hadn’t linked it to my PMR. This is something of a revelation as I assumed it was the cold weather and wind (which have always given me watery eyes.). The “gunk” is a whole other level though. Have been experimenting with microwave mask, Mycellar water, drops and sprays. I have saved all the items on this post so that I can refer to and try other sufferers remedies. Thanks to all of you.

[KathyN]

Hi, please look into the Nulids device. I have suffered for years with dry eyes and felt like I have tried everything available to help including really expensive specialised treatments with an optician and seeing specialists. I was told about this device by a retired opthalmic surgeon and decided to buy one. It is not cheap (around £300 I think) but is easy to use and has completely changed my life - I have gone from horrible inflamed eyes which were always sore and sticky for years to no symptoms whatsoever- from using eye drops throughout the day and even during the night to not at all, it has been amazing. Hope this helps.

[Elor in reply to KathyN]

My goodness that really does sound amazing. I’m so pleased it helped you. Thanks for the recommendation

[Gardendaffodil]

In the past I’ve used warm salt water on a saturated cotton wool pad. Worked a treat.

[Liby57]

Hi I use Blephaclean wipes and Celluvisc eye drops which are additive free. These were prescribed by my optician and I now receive regular prescription.

I also use the hot eye mask for 10 mins each day.

Had a thorough check of my eyes yesterday by ophthalmologist. Had eye scan and pressure check, all thankfully ok.

[Elor in reply to Liby57]

That’s reassuring for you. Thanks for your very helpful response

[Liby57 in reply to Elor]

Yes I was very relieved as I’d had trouble with my right eye the day before my eye test. My right eye was very blurred, felt like it had liquid in front and I could see prisms and had a headache. That’s why I went for the eye test. Ophthalmologist believes it was a migraine. I had never had a migraine before.

[Bobbury]

Me too! Have the same problem. I use the heated mask together with eye drops I got from the optician. My tear ducts have blocked up so using the heated mask and eye drops it does get them working again. Hope that was helpful?

[Elor in reply to Bobbury]

Very helpful indeed thanks

[Woodly]

All the suggestions made are useful but the Eye consultant that my wife sees suggested the use of Flaxseed oil which you can take in the form of capsules or in liquid form. This is information about it:-healthline.com/health/dry-e... and the oil itself are available online.

[Elor in reply to Woodly]

Very helpful indeed, thanks.

[Janetknit]

I see Kathy n uses nulids instrument! I was prescribed this instrument. February 2021 and it is a miracle for healing dry eyes. My last trip to the eye doctor was successful at proclaiming very healthy eyelids… and to continue treatment. Nulids is a battery operated instrument that has a gently spinning head which you replace every day.This is lubricated with your ointments … I use zocushield which I fine superior which my eye doctor prescribes. I also use restatus a orecription eyed top twice a day

That encourages the production of tears. Both are expensive but I swear by them as the stabbing pain of unresolved dry eyes is miserable to live with. Also once a day warm eye mask for 10 minutes , refresh eye drops three times a day and 1 tablespoon of cod liver oil. These were all prescribed to be used to tackle this huge inflammation.. hope you find relief soon!

[Elor]

Thank you so much for your response. I’m glad you have your eyes sorted. That nulids instrument sounds the ticket.

[Doraflora]

Hi Elor (lovely pic btw). I’ve been on Pred 21 months now & this is my 2nd attempt at tapering (DL’s regime - although this time I’m just reducing by half a milligram instead of 1.

My ophthalmologist thought I probably had steroid induced dry eyes, but since I’ve been taking Hycosan my pressures are now within a ‘normal’ range.

However!! My eyes have been playing up lately (I.e. red bags under the eyes but I think some of it was caused by a reaction to some new eye makeup remover 🙄). Anyway, this necessitated me getting checked out at the opticians, after getting new specs only a few months ago, &he said that my right eye had weakened & I needed a new prescription (after only being seen by the consultant 4 months previous), this new prescription has made my sight worse & the optician said I need to get my brain to recognise the new prescription!! BS or what??

The optician also said I had a slight membrane forming behind my right eye & would make a referral for a second opinion. But with the new prescription seeming to be not right, I’m pushing for a 2nd opinion on Monday.

Meanwhile the red eyes still continue but I keep on with thr hycosan and thr bimatropost (to reduce the eye pressure).

Sorry for the ramble but lately I feel like I’m going downhill, but compared to some people my concerns are nothing.

[Elor in reply to Doraflora]

Gosh you’re having an awful time of it! I had no problem with my eyes for the first two years ,indeed early in the summer I got the all clear after a very thorough examination (my Mum had macular degeneration so I’m very vigilant )but just lately they have become very painful. I’m blown away by the response to this post. Thank you so much for sharing your experience Hope you get a positive second opinion

[Doraflora in reply to Elor]

Oh, I’m fine, Elor, I can’t moan about myself when so many on this forum have so much to deal with.

Just a quick update re a hospital consultation: apparently the consultant has seen my notes & thankfully just said it will be a ‘routine’ consultation. When I asked how long I would have to wait they said 4 months, maybe 6!! Hey ho.

[BoaterAnnie]

I had dry eyes before I got PMR, but I swear they are related! Every time I get a PMR flare, there goes my eyes again.

I use the full gamut of treatments:

Restasis RX drops (had this only before PMR)

Lubricating drops throughout the day usually 5x

Gel drops at night

Warm eye mask for 15 minutes twice per day

Blephadex eyelid wipes (geeze these are expensive but work way better than other wipes)

Dry Eye omega 3 oil - 1 tsp per day

Isn't that ridiculous? And it's very expensive since most of this stuff is not prescription so I get to pay for it. I think it adds up to around $200 per month.

I am going to look into nulids after reading the comments above.

But I did want to say that I used to use the eyemask that goes in the microwave. And it worked very well. But it's a hassle or impossible when travelling. So I bought a $30 heated mask that works with USB. It is wonderful because it stays warm longer and has a number of heat settings and timers.

Hope this helps!

[PMRpro Ambassador in reply to BoaterAnnie]

Got a link for that?

[BoaterAnnie in reply to PMRpro]

Here is the link from amazon.ca amazon.ca/gp/product/B07LBL...

[Elor in reply to BoaterAnnie]

That’s very helpful indeed, thanks! The USB powered heated mask sounds good

[Harrywogan]

ELOR I also have very dry eyes have been on Pred for 4 years but haven't put it down to the meds but you just don't know I just use drops 4 times a day good luck and happy Xmas xx

[Elor]

Thanks and the same to you ! I know there’s a danger that we blame everything on Pred.