Eye drops for Sjorgens?

[Littlemissfiggy]

Hi everyone,

I've been referred to rhematology as I have blood markers of SS/SLE and many of the symptoms.

An optician tested me for dry eyes/no tear production (makes sense now 🥴) and recommend eye drops. I've been using the red Hycosan for 4 years. These are no longer working for me. My eyes are extremely painful/dry

I've so many symptoms, it would be nice to get on top of one or two at least!

Any recommendations for drops would be great!

Also what do you all do to help the mouth dryness and choking on food?

Thanks!

Or Sjogrens even 🤣

Do you use an ointment at night? If you just have drops you might find a gel or ointment at night would bring some relief. Hylo Night or Xialin Night are available over the counter and a tube lasts up to 8 weeks. You have to use it very last thing at night, as it will make your vision a bit bleary for a while, so going to sleep is the best idea. For use during the day, Hylo Gel is more effective that drops, but doesn’t make your vision bleary.
You could also ask for a referral to be seen at Ophthalmic Clinic ideally a Corneal Specialist, as long-term irritation can lead to scarring.

Thanks so much for replying @FadedRed and for the product recommendations.

I have tried ointment before and completely forgot this is an option, so a great reminder. Really helpful.

Thank you 😊

I was referred to a local ophthalmology clinic and was prescribed a number of eye drops and eye gel to use at night. Am currently using Hylo-dual drops and Hylo night ointment. I've also had ounctal plugs inserted in both eyes and the improvement has been fantastic although I still need to use the drops about once a day

Sorry just noticed the question about swallowing/choking. I was prescribed Artificial saliva but it doesn't seem available at the moment so was given lozenges but they really aren't effective. A portable water bottle at all times and never attempt to eat without a drink at hand

I use the red hycosan but the opthalmologist I seen recently recommended the nighttime Hycosan ointment. It's been great come to think of it, I've had far less issues

Hylo are just lubricants. To address the inflammation and surface damage you need a bio protectant plus a lubricant. Try thealoz duo and thealoz duo gel, they have added ingredients that help your eyes heal

The punctual plugs are interesting @Jakadaal, thanks.

I've ordered the thealoz duo and will definitely re order the night ointments.

Thanks all. 😊

How did you get the Ophthalmologist referral? Was it after Rhematology and diagnosis? Or was this through an optician?

I used to wear glasses, but they turned out to be surplus to requirements after one optician noticed my vision issues were because of lack of tears and minor surface damage. So is something I need to pick up.

I was referred to an eyelid minor surgery service on the NHS via my GP for dry eyes long before Sjorgens was mentioned. I had an endoscopy for difficulty swallowing and choking and when all came back ok I did some internet searching and linked the dry eyes and swallowing problems (along with vaginal atrophy 😏) and was then referred to rheumatology at local hospital. I'm due to have a lip biopsy next month to try and get a definitive diagnosis.

Hopefully the biopsy will give you what you need? Will an official diagnosis unlock any treatment for you?

I've been presenting with v atrophy, dry eyes, IBS, extreme fatigue, breathing difficulty, joint pain, ear pain, migraines and food intolerances for nearly 14 years now (since my late teens). Understandably all have been treated in isolation.

Whilst I'm relieved to be starting to make progress, I feel like there's still a long way to go (actually getting a diagnosis) and hopefully getting some symptoms under control will make the process a bit better.

It's only since my quality of life has really taken a hit (and my earning power) that I've been able to get the right medical help.

So thanks, it's really helpful to know others' experiences and the extra bits to think of.

I just use carbomer gel 4 times a day. I have water with every meal. I just couldn’t face the artificial saliva. Sucking lemon drops sometimes helps me.

Agree with punctal plugs, but they can pop out and need replacing. I get all my stuff on prescription, Hyloforte, Hypromellose drops, Biotene oral gel, Biotene mouthwash and pastilles. Also look at warm eye compresses which can help, and use Blephasol to clean margins.

I use Carbomer gel morning and night, and I have Clinitas eyedrops for whenever I need them through the day. Always have a glass of water at meal times too.

littlemiss I'm not sure if a formal diagnosis will change any thing to be honest. I believe that there is medication I could be prescribed if appropriate. I was diagnosed with gout during lockdown and am now thinking it's more related to Sjorgens than anything else. So if I could be on the right medication that would be a bonus!

In hindsight I've had symptoms for years including having a raised rheumatoid factor but nothing was definitive.

Like others water when eating, no talking when eating (not easy!), I carry a water bottle and sugar free mints with me everywhere. I am slowly eliminating all of the foods I can't eat without choking (unpeeled apples are the newest along with chocolate ), always sit down to eat etc etc. I first went to the GP for my choking/difficulty swallowing nearly 2 years ago and finally saw the rheumatologist last October.

I have the thealoz duo gel drops for night time and hyloforte drops (the strongest one) every couple of hours during the day. I still wake up around 3 am every night to put more drops in.
I am allergic to any kind of eye ointment, which is quite common I think. So I have to keep reminding the various people in the clinic. It must be cheaper because they keep trying to give it to me.
Heat packs and gentle massage help a lot.

I've not been diagnosed with Sjorens but reading the symptoms, I wouldn't be surprised if I have it too.

I'm also allergic to lots of the ointments and agree that they must be cheaper. The amount of times I go to pick up my prescription only to say, "no I can't have that one, sorry".

I've had Sjogrens since 2019 but suspect it's been creeping up on me for years. Ro and La positive. High ana & rf titers. There's some great advice on here. I've had some horrible post viral/covid flares but got some sort of remission by going 90% vegan organic & cutting out gluten, sugar, dairy & upfs with just occasional high quality meat & fish. My saliva returned and my eyes although dry are nowhere near as sore, red or gritty. I take Boswellia, sea buckthorn oil & EPA fish oil. My friend uses castor oil in her eyes for Sjogrens! I've seen this advocated but not sure about that one. 🤔Best to check with a regd naturopath/dietician. I'm also in hydroxychloroquine but I think this only really helps with joint pain.

I've just seen eye doctor on with private insurance and he's trying to get me approved for six months of ciclosporin drops. They're about £100 a month but I think with self funding if they won't pay. Already have punctal plugs use hycosan night and 1% celluvisc drops on prescription. I have psoriatic arthritis and appear on enbrel, methotrexate, sulfasalazine. Cornea ok ish at present but previously had scratches

I've just been given cisclosporin and told to ask the go to put on repeat,
I also have been told I have srjorens and can't ever get rid of dry eyes and mouth. Just had corneal scarring again and it's not clearing!

Have you tried Viscotears?

As for the dry mouth, Boots do a mouthwash for dry mouths which is vaguely oily but personally I don't like the feel. Apart from always having water to hand I've not found a solution. Visit your dentist more often and see if they can offer Duraphat on prescription (high fluoride to protect your teeth)

Pilocarpin was prescribed to try and stimulate eyes and mouth liquid which didn't help, I just felt yuk.

Good luck with your endocrinologist.