Hi my friends.
I want to ask if anybody experienced severe dry eye and what solution worked properly?
Dry eyes is the only symptom I have. I’ve tried many of preservative free artificial tears but still suffering a lot. I’m holding my eye drops in my hand everyday everywhere even at night in bed. I’ve also tried hot compress on lids. Because of dryness I can’t apply any makeup as it irritates my eyes badly. This situation is driving me crazy.
Is there any other effect treatment?
There is an eye gel made by Genteal that you can put into the eyes to lubricate at bed time. Another alternative is to get tear plugs put into your eyes at the Ophthalmologist (medical eye doctor, not optician.) Go see the Ophthalmologist, they can guide you better. What I told you is doctor's guidance, I see him once a year.
Thank you dear ninjagirlwebb I’ve tried those over night gels but it causes burning in my eyes!
I’ve heard about punctum plug and hope this treatment would fit me.
There might be other options that the doctor can recommend.
Have you tried hypromellose drops? I am prescribed these for dry eyes (Sjogren's syndrome). Do you have Sjogren's? Many of us with PBC do. More than anything else, reducing sugar in my diet has improved dryness in my eyes and mouth. I hope you find something that relieves this for you and protects your eyes.
I don’t know if I have sjogren or not. I booked an appointment with an ophthalmologist in next 2wks to see what’s wrong with my eyes.
What is hypermelloss drops?anything different from artificial tear?
It is an artificial tear of a kind. It can be bought over the counter, (without prescription) at strength 0.03, and from doctor at strength 0.05. There is a number of different artificial tears and like most remedies, they have more than just the active ingredient. It is often these additives that cause irritation to some people. First time I used hypromellose it was a little sore, but after a couple of days I had no bad reaction to it. Sometimes, just because the eye is already sore and inflamed, anything you put in hurts. But you will see ophthalmologist soon and get the best advice. I'm sorry you are suffering from this Sona_akb, and hope you get relief soon.
Thank you for your advice. I’ve read from articles that severe dry eyes can alter quality of life like a heart angina.
It is a big interference in our lives isn't it? It is'nt less sore even when you close your eyes? PBC Foundation emphasises that the medical profession needs to respond by treating the symptoms of autoimmune conditions. For that to happen we need to have the time and energy to tell our medics about it and that's not easy sometimes! I like how this forum can make us better able to ask the questions and informs us that there is a variety of solutions.
Yes the only thing that helps calming down is closing eyes.
You’re absolutely right, I feel so comfortable to discuss my issues here and always getting golden advices from my friends here. I’m so lucky to have you all by my side.
I agree with you. We have each other, all different and all the same. I thank Collette at PBC Foundation for this meeting place. She got it all started because she had no information and no-one with the same disease. I think Collette will feel rewarded by your comment that you feel lucky, and that you are using this resource to help you. And you are helping us all with your honest sharing of the matters that are causing you difficulty. Best wishes
I have just been diagnosed with Sjorgrens and will have the ducts put in end of May. I was prescribed Thealoz Duo by the eye doctor.
Interesting about sugar as will see if that causes flare ups. It is definitely worse at times and I have thought it could be weather related as feels like hayfever.
I'm sure weather, pollen and airborne pollutants get to my eyes too! I noticed grasses are already in full bloom and loaded with pollen here, ....
My eyes constantly water and it drives me mad. This is a symptom of dry eyes apparently. Over compensating for lack of tears or something. My GP gave me some drops but they do nothing. I hate it, it ruins my make up - something I love. If anyone has a solution I'd be very pleased to hear it.
Do you have constantly watery eyes too?
No I wished I had watery eyes instead of extremely dry eyes which made me to constantly use drops.
Hi my eyes sting and are sore iv got drops I use daily and eye ointment I use at night it really makes a difference sake your GP
Its such a pain isn't it - either way!
Yes it’s like a big problem for me
I want my bright eyes back😭😭😭😭😭
Same here feel as if iv aged in a few month
I've had my eyes checked due to this same issue. My eye doctor believes it's from PBC so I'm currently using two different eye drops
Systane balance lubricant eye drops
Systane Gel drops lubricant eye gel
How many drops do you use daily?
Dr said I can use as often as I feel the need but just rotate between the two. So I do two drops each eye but I use the balance in the day time and gel drops in the evening and night time. The gel drops makes your eyes a little blurried at first. So far they give me relief so I use as needed hope this helps 
Hi, there, optometrist here who was myself recently diagnosed with PBC. I have suffered from dry eye for at least 10 years and evaluate/treat patients with it every single day. It's very common in all middle aged women, but especially in those who have autoimmune disease. Here's a break down of symptoms and treatment options:
Symptoms:
Dry, scratchy eyes (duh)
Reflex tearing (counter intuitive and can be significant and very annoying)
Visual fluctuations (especially when reading, driving and looking at a screen)
Exacerbating factors:
Certain medications (antihistamines, decongestants most commonly)
Computer use or reading (good to follow the 20/20/20 rule of looking at something 20 feet away for 20 seconds every 20 minutes)
Air blowing on the eyes (like a fan, AC vent or just being outside in the wind)
Treatment:
Artificial tears are the mainstay of treatment (Refresh, Systane, etc. Gel drops are best if you can tolerate a little blurry vision for a few seconds) If using more than 4 times a day, best to use non preserved, single dose vials.
Warm compresses daily (Google Bruder mask) to stimulate the oil glands in the lids.
Omega 3's have been shown to help, and I take them myself.
Prescription drops: Restasis or Xiidra. I have personally used both and didn't have success, but I have many patients who have benefited dramatically. They typically take 2-3 months to get full effect and both drops have some side effects that can be an issue for some (Xiidra can leave an aftertaste in the mouth that some find unbearable, Restasis stings when you use it)
Steroid drops can also be used for short term relief when symptoms are exacerbated. They should not be used long term. These work well for people who are in significant pain to get them to a baseline level that can be treated by artificial tears, and I prescribe the frequently in my practice.
Lipiflow: This is a procedure that's done in office (typically costs $1,200-$1,600 and unfortunately not covered by insurance) to stimulate the oil glands in the eyelids (meibomian glands) I had it done myself and and had a moderate response. It's not widely available, but you can probably find an office that does it if you live in or near an urban area. I have no idea if this is available in the UK?
Sorry to inundate with info, but hopefully, some of you will find this helpful. Best of luck to you all!
Sorry, forgot to mention punctal plugs. These can be beneficial for those with severe *tear deficient* dry eye like you see with Sjogrens. The vast majority of us have *evaporative* dry eye, which means we make enough tears, they just lack the right oils to do a good job. Even in the autoimmune population, evaporative dry eye is MUCH more common than tear deficient. Also, like I said, dry eye is a major problem in middle aged an older women whether they have autoimmune disease or not, so I wouldn't jump to the conclusion that you have Sjogrens just because you have severe symptomatic dry eye.
I’ve very severe dry eyes with punctual plugs, on cyclosporine (Ikervis) hyloforte drops every hour, heat goggles, night lubricants, steroid drops when I need it. This has been the most debilitating condition where I can no longer work. I have severe photophobia and when eyes are at their worst have to wear sunglasses constantly. The punctal plugs gave immediate relief but just not enough. I have them in bottom ducts. We tried having them in top as well but they caused too much watering. So I’m obviously an in betweener! The ikervis does work but not a miracle drug (in my case anyway). Weirdly, The biggest help was going to a hot humid climate in Columbia. I went there for 6 weeks spending much time in the rainforest & for the first time in years could take my sunglasses off outside. When I returned to UK, my Schermer’s tests were improved. My eyes have actually stayed improved but still debilitating. I researched & found that testosterone has a direct affect on Meibomian glands & mentioned it to my ophthalmologist who agreed I should try it. It’s administration is via Chelsea & Westminster GYN. It has to be carefully monitored with blood tests. I have now been on this Tgel for 8? Months. Definite improvement. I’ve dropped down in my hourly drop taking to 5/6 times a day & have stopped night gels. It also helped my constant pain. My itchiness has subsided after many years. This has to be monitored very carefully by professional & they have to test first for levels of testosterone before embarking on this path. In my case, I had zero. If you have good levels, you can’t take it. Everyone is different so my experience may not work for others. I’ve become a bit of an expert on this as I was so badly affected. Still am but just not as intolerable. I also wear goggles when I can as it helps remoisturize the eyes. There are also eye plasters which I have not tried. So, go for a holiday in a hot humid climate! It’s worth a try!
I meant to say I wear anti fog with uv protection lab spectacles /goggles. I wear them at the computer & when doing housework and cycling. I look like a bit of a twat on my bike but it really helps,
Ah... one more thing I’ve been on that definitely helps: Doxycycline. I’m very anti antibiotics but this has helped!! It has anti-inflammatory properties by inhibiting MMP-9 and IL-1 synthesis. ...
Great 👏🏻👏🏻 That was so helpful for me because I find out why my eyes are worse recently. I’ve used antihistamines for my sping time allergy and been infront of fan.
I used cyclosporine drop couple of months ago for a short time and didn’t realize any improvement and discontinued by my own opinion 🤦🏼♀️ So you say I should have maintained it for at least 2-3month?
Again thank you for taking your time 🙏🏻
Yes, when I start patients on cyclosporine (Restasis) I tell them that they need to commit to 3 months or not do it at all. I will often start them with a steroid drop concurrently for 2 weeks to ease the stinging and help get things under control. I also find that the improvement with Restasis is so gradual that patients often aren't even aware of the improved symptoms until we talk about it at their follow up and discuss the issues they were having previously. Then they realize that things really have improved. But like I said, it doesn't work for everyone. Oh how I wish there was a magic bullet for dry eye!
I’m 32. I don’t know if I have sjogren or not. But all the symptoms appeared after laser of my eyes and continued to be worsen during time. At fist my doctor said you have MGD and didn’t test me for sjogren. He said you eyelash base is extremely inflamed.
I feel really good in morning but so bad at night after work.
You think it’s evaporative or tear deficient?
I remember my first schirmer test was about 1mm for each eye
MGD goes hand in hand with evaporative dry eye. The inflammation of the lids causes a decrease in the secretion of oils from the meibomian glandS. I typically treat MGD with warm compresses (Bruder mask), lid scrubs (Blephadex wipes are good), omega 3s, and artificial tears for the dry eye. Lipiflow is really good for people wIth MGD as well. I sometimes prescribe oral doxycycline for 3 months but would avoid in people like us with liver issues.
I’ve done all you said except lipiflow which I don’t think it’s available in my country but it’s good to know so I can ask my doctor about it. I can travel to some where to do it.
At first I thought all my symptoms are related to my lazek (or lasek? Laser) but it was 5-6 years ago.
Well, LASIK absolutely contributes to dry eye, even years down the road, so that is very likely a factor too.
There are many factors: LASIK, pbc, maybe sjogren, MGD, may job as a radiologist, always being on my phone...
Sorry for too many questions, can you please explain what’s the exact pathway that cause dry eye in pbc? Is it possible to have dry eye (as a PBC patient)without having sjogren?
It is absolutely possible to have dry eye without Sjögrens. In fact it’s much more likely. I think the major thing to realize is that the vast majority of people who have dry eye (even those who have autoimmune disease) do not have Sjögrens. You have three significant risk factors for dry eye: MGD, s/p LASIK, and an autoimmune disease. I would bet that your dry eye is related to those things and not because you have Sjögrens (there is a blood test that can be done) Dry eye is the number one side effect of LASIK. The thought is that when the corneal nerves are cut for the flap creation, it alters the feedback response for tearing. But this is just a hypothesis. Almost all Sjögrens patients will have dry eye bc Sjögrens specifically attacks the lacrimal glands, but not all dry eye patients have Sjögrens. In fact, in my practice, less than one percent of my dry eye patients have Sjögrens. And this includes people with severe dry eye. As far as why people with autoimmune diseases (non Sjögrens) have more incidence of dry eye, it’s thought to be because the root cause of dry eye is inflammation, and people with autoimmune disease have more inflammation.
Thank you Sallybfree so good to have such talented members here👏🏻👏🏻👏🏻
Thank you so much for taking the time to write on this thread. Dry eye is so misunderstood. People just can’t comprehend the havoc it causes. Sadly, I can’t work on computers so my work life is very limited. I’m trying to reinvent myself but at 56, that’s very difficult! Did you know about the testosterone link?
I had 2 lip biopsies a year apart because they just couldn’t believe I didn’t have Sjogren’s. It did highlight some issues with my salivary glands showing inflammation but wasn’t “consistent” with Sjogren’s. But they say they still need to keep an eye on it as I might be in early stages. But they excluded it for now. BTW - the lip biopsy is nothing to be scared about. Mine started healing very quickly & I’m
Not a good healer normally. It’s put my mind to rest, so well worth it but do make sure you go to an expert hospital as my first one was done wrong by inexperienced surgeon who did not collect sample from correct area!! Hence why it was done again.
Hi there, I have sicca, have been on Restasis for years which helps tremendously. When I first started using it , I had to put regular OTC eye drops in each eye 15 minutes before the Restasis drops, ( so the drops wouldn't feel like burning my eyes). I have also had problems with my parotid glands (dry mouth & recurrent infections in gland), so my Dr prescribed pilocarpine which ,serendipitously helped with my eyes. An ophthalmologist needs to be one of the 'team'. Good luck!
Thank you @belliver
Everyone here is saying about Restasis so it looks like I must give it a try. Wish me luck in new treatment
I read your posting with interest. My doctor gave me some samples of Restasis to try and they were so uncomfortable that I stopped using it. I figured that the whole point of using drops was to stop the burning in my eyes and this was doing the opposite. No one suggested using lubricant drops first. That doesn't undo the effectiveness of the Restasis?
Hi, I did complain to my ophthalmologist about the burning sensation & he told me to use otc drops ( he likes the kinds that do not have any preservatives--like Systane) wait at least 15 minutes, then put the Restasis drop in each eye. It's so long ago but I did as he instructed and soon I was not bothered by any burning sensation. It's also important to stay well hydrated, but sometimes I still use the otc drops between Restasis doses. I also use an ophthalmic antibiotic (erythromycin) on my eyelids on occasion for low grade bletharitis flares.
Ditto. You need to lubricate before but as your eyes get better, the sting goes away & you don’t need any drops before. It takes a while but it’s worth it. It took me 3 months to start to think they might be helping & 6 months to know they were.
In general, I use Systane lubricant eye drops. I keep a bottle in my purse, in my car and next to my bed. Most days, I only use them in the morning and at night but when I need them, I need them NOW so I always have some with me. I find I use the drops more often at certain times of the year - like now - when there is a lot of pollen or other dust in the air. However if your dryness is that severe, it seems like you should see an opthamologist about the situation. If you blink and your eyes are too dry, you can scratch the corneas. You mustn't just suffer with it.
Yes I think mine is sever because I’m using drops every like 20mins and that’s really un tolerable for me. I feel shy infront of other people and friends and don’t feel comfortable to explain about my problem. My eye makeup looks messy by using drops. Someone may think these are not really serious problems, but they actually are.
my opthomologist gave me Restasis eye drops to slow down the immune system in my (attacking tear ducts). I still have no tears but my eyes aren't scratchy, red and sore all the time anymore! (and seasonal allergy eyes and nose are gone too as a bonus). He also gave me HYLO gel drops for extra bad days (works but is SOO expensive!)
Hi Sona
I use HYLO -FORTE through the day and Vita Pos at night before I go to bed. I get these on prescription from my doctor . Hope this is of help to you
I am a 65 year old male that was diagnosed with PBC in 2012.
Once in awhile my eyes will start to burn and it feels the same as if I had soap in my eyes. It seems to occur more often than not when I am outdoors with a slight breeze. It has occurred riding a bike, on the golf course, and working in yard. It stings so bad I have to stop what I'm doing . My eyes water profusely when this happens.
This rarely lasts any longer than 10 minutes.
I always blamed it on perspiration, now I wonder.
My optometrist gave me samples of eye lubricant, but it happens so sporadically, I don't use them.
Thoughts?
I use viscotears but keep forgetting to take them with me when I am away from home.
Hi I no wot that fills like drives me crazy I don't take anything for mine
Have no idea but it's so unpleasant xx
Burning eyes
sjorgen testing
Eyes
