Dry eyes on waking

[Deniseelk]

My 18 year old daughter has just been diagnosed with Sicca syndrome and is being troubled by dry eyes on waking.

I have heard there is a particular eye drop product that is very good. Does anyone have suggestions, please.

[weathervane]

Hylo-forte eye drops are excellent, you can get them on prescription or buy over the counter. Hope this helps 😀

[Deniseelk in reply to weathervane]

Thanks. Have some arriving Tuesday and if happy with them will ask her Rheumatologist to put on prescription!

[weathervane in reply to Deniseelk]

Hope it helps Denise , my son has lupus and i know how worrying it is to have a child with a chronic condition xx

[Deniseelk in reply to weathervane]

Oh I am sorry to hear that, Lupus is a real nasty. That’s interesting! Do you have an auto-immune disease... if you don’t mind me asking? I have RA so we weren’t totally surprised when she recently got diagnosed but she has been fatigued for some 8 yrs plus with very random on and off symptoms that nobody pieced together after MANY GP

Visits ( with just about every GP at our practice over the years).... most blood tests u can imagine run over the years with no real findings apart from very low Vit D. Finally, a GP said this has been going on for years so clearly something is wrong let’s look at a Rheumatologist so I requested mine. One visit, ran tests , did the dry eye test and said pretty sure Sicca syndrome.... results given over phone as Coronavirus hit so lots of questions but she immediately started Hydroxychloroquine ( I am on that and I inject Benepali weekly, too) so know all about Hydroxychloroquine! She also has Epilepsy ( diagnosed at 10) so different avenues and medications to consider. What medication is your son on and is he well controlled at this time?

[Warrior15]

So sorry to hear your daughter is struggling. I have severely dry eyes from sjrogrens syndrome - Vita-POS was a life saver for helping with overnight dry eye issues. You put it in before bed and leave it on overnight 🙂

[Deniseelk in reply to Warrior15]

Thank you very much we will look into that product! Do you mind me asking what medication your Rheumatologist has prescribed, please? Do you feel it is controlling your symptoms?

[Warrior15 in reply to Deniseelk]

I have lupus as well so that complicates things a little. I’m on hydroxy, 400mg and pilocarpine. I also take omega 3. My symptoms weren’t being very well controlled up until the start of this year. After 3 years of on and off inflammation and infections in the eye, to the point that I couldn’t go longer than a week without one (the longest infection lasting for 6 months) I’m now on two lots of steroids and a 3 month course of antibiotics for my eyes. This has helped massively and since starting them I’ve had no eye infections. Very thankful to have finally seen an ophthalmologist who understood what was going on. I feel the sjogrens is now under good control, however I’m currently experiencing a flare in other things, exhaustion, headaches, sore /achy joints, severe sun induced rashes, neutropenia, lymphopenia amongst other things (this could be the lupus side of things but it’s complicated). Hope that answers your questions? 🙂

[Warrior15 in reply to Warrior15]

Oh I should add the dryness is still quite severe but we’re hoping punctual plugs will help this 🙂

[Deniseelk in reply to Warrior15]

I am so sorry to hear this. It’s so difficult, when experiencing multiple conditions, to establish what medication is being effective. I have RA ( although understand nothing in comparison to Lupus) but can empathise with some of your symptoms and the inflammation and all the chronic issues it brings! I hope your flare passes soon... be kind to yourself, try to rest and relax and do things that make you happy.

[MichelleHarris]

I have Hyabak drops, Xailin ointment, Pilocarpine tabs, a humidifier and Hydroxycholoquine tablets still difficult to open in the morning. Ive been referred for eye plugs x

[weathervane]

Hi again Denise , i have Sjögrens , initially i was started on hydroxy but it made little difference to the severe symptoms i was experiencing. I couldn’t function due to muscle pain , exhaustion , flu like symptoms and lymph node enlargement. I was then started on rituximab which made such a difference when it kicked in . My son has lupus profundus and is on hydroxy and methotrexate, his skin problems are well controlled but still has exhaustion and joint pain .

Best wishes and please keep us updated with progress xx

[Deniseelk in reply to weathervane]

Hello Weathervane, as you have seen from my posts the eye drops appear to be helping daughter’s dry eye which is positive. Interestingly, thinking of your son I was on Hydroxychloroquine ( 400mg daily) then had Methotrexate ( tablets) added. I tried for 6 months but had too many side effects from the Methotrexate that I just couldn’t tolerate it. Now I must say this was in my early days of RA diagnosis so it was not controlled at all but I found the Methotrexate wiped me out. I would take it Sunday night and felt truly exhausted until around Late Tuesday/ Wednesday morning( so I lost a good 2 1/2 days every week)! When I stopped it the extreme exhaustion was certainly better. I wonder if he could consider the injection method which is meant to have less side effects? I switched to Benepali injections ( weekly) for my RA and it has really worked for me. I trust he gets his Vitamin D level checked too as this can cause joint pains too? Often it is so hard to work out which disease is causing which symptom and I often question if it is something else causing the symptom.... hope both of you are well!

[weathervane in reply to Deniseelk]

Thanks for that advice Denise , unfortunately he hasn’t seen the rheumy recently but I have been wondering about injections as i see from other posts that some people find the injections alot easier, I don’t know what my son would feel about it ! His vit d was low so when he was diagnosed he was started on it .

I agree with you though , symptoms pop up and you first thought is ‘ what has this disease done to me this time ? ‘

Best wishes to you and your daughter and keep well xx

[harmony2 in reply to weathervane]

@Weathervane are you in UK? I need to try something as Hydroxychloroquine not doing anything for me. I have never been offered rituximab, though I’ve enquired about other options.

How was the process of getting on it and how long did it take for you to start to see benefits? I have Sjogrens. Also have fibromyalgia and multiple other diagnoses but not other autoimmune diagnoses.

[weathervane in reply to harmony2]

Hi harmony , i was initially started on hydroxy with little improvement, my rheumy then suggested rituximab and I fitted the criteria for it , i was feeling really ill at that point and would have agreed to anything, i was in bed alot of the day due to pain and exhaustion. I dod notice some improvement after first infusion but much more after second course, though took 12 weeks to get to that point .

I am not sure of exact process of getting prescribed rituximab as i had severe brain fog . You should discuss the possibility with your rheumy as its not appropriate for every case .

Best wishes, i hope you can get the right treatment to help you 🌸🌸

[harmony2 in reply to weathervane]

Thank u for reply. I didn't expect you to say you are in UK! Hmm... I wonder what criteria are or how to find out. Will try to explore. thanks again.

[Deniseelk in reply to harmony2]

I believe you can access the NICE guidelines criteria to see what steps your Rheumatologist needs to take. Maybe another member here knows where it can be found on the NHS website?

[harmony2 in reply to Deniseelk]

Thank you will look at NICE website

[Zebra5]

Hycosan Night is very good.

[Cas70]

Hi Deniseelk - you have a lot of different medications in those replies as Unfortunately there isn’t one med that can help. I use Celluvisc 0.5% for my eyes - so that is another one you can have for her as an alternative. I hope she has been told to drink lots of fluids - I find that really helps and I take a small amount of Turmeric every day. I can honestly report my arthritic pain level has gradually lowered to a level of not needing pain relief. I have Lupus and Sjogren’s. A simple thing I was told to try is using cotton wool and very warm water just hold that on closed eyes - it triggers something to help the eye and I certainly found it feels very nice. I apply the Celluvisc as and when needed and used to carry it around with me, but things have improved as I also wear tinted glasses all the time as they protect the eyes from a lot of things. Good luck

[Cas70]

Sorry, I just saw another question from you - my dentist was one of the first to see that I might have Sjogrens and gave me a sheet of does and donts - Sugar loves Sjogren’s - reduce as much as possible. She prescribed a special toothpaste Duraphat 5000 - there is a lot to be said for Biotene also. Her mouth mustn’t dry as the saliva keeps the gums from infecting. Find a dentist that knows about Sjogren’s !! She needs to keep her mouth moist at all times so the odd sugar free sweet and I keep chopped apple around and put apple and cucumber in a water jug in the summer - any fruit you like really. Hope this helps but an uneducated dentist doesn’t.

[Katerina1]

Hello, good to hear you are getting hylo-forte. Just to mention there are two strengths - hylo tear 0.1% and hylo forte 0.2%. I have Sjogrens's and have been prescribed both for years. I use the stronger one overnight and first thing in the morning and the 0.1% during the day. Worth mentioning that different eye drops suit different people and I tried several which irritated my eyes before my doctor found hylo tear and hylo forte.

[Deniseelk in reply to Katerina1]

Oh I was unaware! I will go check which one she’s using now. She certainly hasn’t had any issues with it but I will ask if she thinks it’s helped as used it for several nights now. Think it might as she hadn’t been complaining about her eyes last few days 🤞.

[Deniseelk in reply to Katerina1]

Hi Katerina, luckily it’s is the 0.2% strength she has and she takes this just before sleep. Interestingly, she forgot the night before last... woke in night with dry eyes... used the drops and woke in the morning fine! Think that is proof it is working for her. A question, if you don’t mind? One of the ( many) peculiar symptoms she experiences is she wants her meal but literally has about 2 mouthfuls and feels full up. She often comes back to cold plates of food later when she feels she can eat. This doesn’t happen all the time but is random... like lots of the symptoms. It was only by a chance google that it suggested inflammation in the gut which makes one feel full and unable to eat. Shortly after she was diagnosed with Sicca syndrome.

[Katerina1 in reply to Deniseelk]

Hello, glad the eye drops seem to be helping. I have heard that feeling full up after a couple of mouthfuls can be caused by gastritis. This is supposed to be more common with autoimmune disorders like Sjogren's. Crohn's comes to mind too. There must be lots of possible causes though. Unfortunately it can be difficult to get answers at the moment, but doctors seem to be concerned if someone is losing weight unintentionally. If it continues I don't know whether your daughter would be able to be referred for tests to investigate.

[weathervane]

I didn’t realise there were two strengths of hylo forte , i have been using the 0.2% day and night , good to hear things are improving for your daughter!!

[harmony2]

Hi.

Punctal plugs.

Xailin ointment, Night and day.

Sometimes a warm compress that I bought, put it in the microwave for 30 seconds and press on my eyes helps or at least soothes, I don’t think it helps loosen meibomian gland oils any more.

No fans, windows down in the car, vents blowing on face, et cetera.

On a really bad night I have to make a tent over my head with big fluffy pillows on either side of my face and the sheet pulled up over my head. The pillows on the sides of my head keep the sheet from laying directly on my face. The tent creates a pocket of moist

Related explanation:

Even in places you do have some residual moisture, these may be poor quality. For example: tears, oils in your skin, saliva and nasal passage mucous, vaginal fluids, digestive fluids, et cetera,

Often these fluids do not have the proper biochemistry. So, for example, I do have a tiny bit of my own tears which I retain with punctal plugs. But the lipid (oily) component of normal tears, from the meibomian glands, is so poor or so reduced that my tear breakup time (Tear BUT) is about two seconds. So that means within two seconds of a blink, because of my poor tear quality, my eyes have dry spots on them. Also when I sleep at night apparently sometimes I have my eyes slightly open. This is painful and irritating (feels like I constantly have something in my eye on the surface of my eye like dust or fluff or sand). It affects me day and night. So much so, that I must use the so-called “night ointment” for dry eyes (I use Xailin here in UK, Vita-Pos no longer available) both night and day. I have not found any drops, including multiple prescriptions I have sampled, which are sufficient. This eye dryness is not just a small issue. It affects my vision and it causes me to be much more sensitive to light. It affects my driving, reading, computer and a lot of other work. Along with many other symptoms it is painful.

[harmony2]

PS. Pilocarpine but you have to take it with at least 6 ounces maybe 8 ounces of water or with food and drink, or else, in my experience, it makes me sweat and can also irritate my overactive bladder.

[harmony2]

Deniseelk ,

Whilst looking up something weathervane said to me I found these, which you might find helpful. They are fairly comprehensive overview with details, too, if you like that.

cks.nice.org.uk/dry-eye-syn...

NB: "CKS" in above link stands for "clinical knowledge summary".

awmsg.org/docs/awmsg/medman...

and about more 9 web links at end of the link immediately above in final section, 5.0 FURTHER RESOURCES.

Blessings