Dry eyes and HRT

[Stills]

I’ve had mild dry eyes since Stills Disease diagnosis in 1979. It has got a lot worse in the last 15 years and more so these last two years. Optician saw damage and suggested drops which I’m using. I read that HRT may increase the likelihood of dry eyes or worsen existing conditions. Any knowledge or experience of this please!

I’m not on RA meds, not seeing a rheumy and my surgery is in permanent lockdown mode. I have an eye test booked in March.

I started new symptoms Feb 23 including eyes, cancer ruled out, thyroid ignored despite swollen gland in neck developing into a …. Obstruction. Eyes likely thyroid related in my lay opinion but interested to know if HRT contributes. Mind you I wouldn’t ever want to stop the HRT.

[Madmusiclover]

my eyes get worse off HRT. I asked for a referral to opthalmology. They were helpful.

[Stills in reply to Madmusiclover]

Thank you

[Fruitandnutcase]

Don’t know about HRT - it’s so long since I was on it but I don’t remember my eyes being any worse back then, mine have always been dry. I had Graves’ disease in 2012 and although I didn’t have fully fledged thyroid eye disease I definitely had problems with my eyes and they were definitely super dry!

What I have found since I discovered in 2020 that I have osteoporisis and started taking these DHA omega 3 capsules for my bones is that they have made an enormous difference to my dry eyes. So I can definitely recommend giving them a try. I buy mine from Amazon.

ebay.co.uk/itm/266963899157...

Also be sure you buy preservative free dry eye drops - I like Theolose Duo but there are others HycoSan, all sorts of brands that are good but be sure to get preservative free drops.

Put them in regularly throughout the day - maybe every hour or so to start with then see how it goes and you can reduce the frequency. Hot compress held over your eyes, either a wet face cloth or buy an eye bag from your optician, that feels good too, then when you remove it you can massage your eyelids.

I agree, I’d stick with the HRT if you can, I hope you can get your medical team to sort everything else out out sounds like there is a fair bit for them to work on doesn’t it. Good luck with it all.

[Stills in reply to Fruitandnutcase]

Thank you and yes I use preservative free day and night drops as recommended by optician. I suspect I need to use them more than morning and evening as you suggest.

I’m still on the thyroid journey…..but losing my eyebrows rapidly.

I will look at eye bag options too, thanks for the tip.

I’m oestroporotic having taken high dose steroids aged 17-22 without preventative therapy as in 1979 I don’t think they knew about it but I’ve worked on my bones hard until I was 40 and hopefully that’s made a difference. Thank you for your input.

[Cat-E in reply to Fruitandnutcase]

Hi, can I ask why preservative free? I have used eye drops for the past year or so - same as others, RA and menopause came at the same time so I don't know which is the cause - my optician recommended eye drops but never specified a type and I said I just bought the cheapest supermarket ones. I have googled but can't really find a reason for preservative free unless you are allergic. Wondering if I'm missing something as I have seen the comment about preservative free a couple of times.

[Fruitandnutcase in reply to Cat-E]

A lot of people are or become allergic to the preservatives. Much better to avoid them if you can. The preservatives in them can cause irritate your eyes so if they are already irritated then it’s probably best to go for preservative free eye drops.

If you think about it - you probably wouldn’t want to eat food filled with preservatives so why would you want to put them on your eyes?

[Cat-E in reply to Fruitandnutcase]

I see your point, but in my head, as a bottle lasts me about 3 months I also wouldn't want to be putting something that had gone off in my eye either.....do eye drops go off 🤷‍♀️

[Fruitandnutcase in reply to Cat-E]

They do, think it tells you on the bottle how long they are good to use use.

You can only do what’s best for you and your purse - even when they were prescribed on the NHS it was very difficult to persuade a GP to prescribe the more expensive preservative free ones.

[Stills in reply to Cat-E]

The mantra is less the chemicals the better I think

[emmajj1971]

You can see an optician for an nhs consultation as most GPs won't see you for any eye conditions now. I am buying my own eye drops your opinion will recommend the best ones

[Stills in reply to emmajj1971]

Yes I’ve been buying my eye drops for several years, they do help. My eye test is early March so will check things out with the optician then .

[Blackwitch in reply to emmajj1971]

My optician wrote to my GP years ago asking them to prescribe preservative free eye drops and I now use Thealoz Duo which can last 6 months after opening.

[Numptybrain]

I have sjogrens and using drops gels and a wonderful eye mask I bought off Amazon that has 3 heat setting. I’m now waiting to see hospital ophthalmologist.

Take care

Wendy xx

[Stills in reply to Numptybrain]

Which mask please?

[Numptybrain in reply to Stills]

Arras heated eye mask

[Trec]

I’ve had dry eyes for over 14 years which worsened after a Trabeculectomy operation on my left eye for glaucoma. I was prescribed double strength eye drops, 0.2% , by my glaucoma consultant to be used 3 times a day with added 0.1% capsules used in between when necessary. The left eye was worse than the other probably due to the operation which involves an open flap under the eyelid to relieve pressure and recently my consultant has told me to now use the stronger eye drops 6 times a day plus the capsules as and when needed. The left eye is causing me so much pain and soreness I really don’t know what to do sometimes. I hope you can find relief somehow, it really does get you down.

[Stills in reply to Trec]

Thank you

[Maggsie]

As Fruitandnutcase responded, my dry has improved significantly since taking high dose Omega 3. Its It's not perfect , but it's definitely improved.

[Trec in reply to Maggsie]

I’ve taken Omega 3 for nearly 40 years and can’t say it’s helped but I’m glad it has for you, Always worth a try.

[strongmouse]

My husband has RA and he developed very dry and gritty eyes. He's been seen by the eye doctor and takes eye drops regularly. He has just has cataracts replaced. He is wondering if he has Sjorens disease which is another autoimmune disorder. He has very dry mouth too Apparently the GP can send for the needed tests. Apparently swollen neck glands can occur as well.

[Stills in reply to strongmouse]

I admit I have developed other AI conditions over the decades but also that they seemed to arrive at the same time as menopause, LS and IC for example. It’s possible SD has always been present but just got worse as I’ve got older. I have a constant sore throat which I attribute to I Stills disease but equally could be from SD especially as my mouth is dry and my neck gland swell. In 2023 there was a suggestion of some sort of lymphoma as my Dad had NHL and apparently having a RD may make me more susceptible. Any the drops help a little which is something.

[Vixen2]

Hi. I’ve had Iritis & Glaucoma since the beginning of my Reactive Arthritis. (Since i was 21). Since the bloody menop i’ve had the most awful dry eyes & dry mouth. Mine started after my lovely mum died. We were very close. She died of the evil c 7 yrs ago. I’m wondering if losing her, triggered the meno. I have fake tears & fake saliva. I tried to avoid HRT. But i had to. Couldn’t stand hot flushes, really bad mood swings. Depression. HRT has been really good for me. Although i still wake up with chronic dry eyes & mouth. Reading what you’ve said. That HRT can make those symptoms worse. Has made me feel worse! I might see my gp about this. Good luck with your ‘crap’ too. X

[Stills in reply to Vixen2]

It was a casual research on google so Di check other sources first

[Vixen2]

i’ve actually just read that thyroid problems can cause these symptoms too! Blood tests can help spot these. When i have my next infusion. I’m going to ask if they can check my bloods.

[Stills in reply to Vixen2]

Yes thyroid symptoms may include sore dry gritty eyes. Thyroid conditions seem very complex, I follow the HU pages. Let us know how you get on at your next check

[Ailsa-NRAS Partner NRAS]

Hi there

I have uveitis and dry eyes so very familiar with the problem and get my eyes checked every 4-6 months by my eye specialist. I use Hylo forte (preserv. free) which is less gloopy than some of the eye gels and is on my regular repeat prescription. However, I am concerned that if you have Stills disease that you are not under the care of a rheumtology team and an ophthalmology specialist rather than just an optician. If I were in your shoes, I would definitely get referred as without any medication you risk damage that can't be reversed and you mention the dry eyes getting a lot worse. My recommendation would be to get an appt with a rheumatologist and a referral to an eye specialist. Eyes are so precious, perhaps better to be safe? I hope this is helpful.

NRAS National Patient Champion

[Stills in reply to Ailsa-NRAS]

Very pertinent point. I’m so used to putting everything down to Stills and just accepting it. I need to take more care I think. Thank you for your reply, much appreciated.

[WilfDog]

Hi Stills. I think Ailsa has a point. Maybe it's time for you to get another review of your Stills. Your symptoms overlap with several illnesses, but without a proper review from a rheumatologist, things may get missed. Hope you're able to sort something out and your symptoms are relieved. xx

[Stills in reply to WilfDog]

Well given diagnosis was made in 1979 I guess things have changed since then so you’re likely right.

[WilfDog]

Yes you were diagnosed at a similar time to me and medications and treatments, complementary or otherwise, have advanced since then, so it's worth a review I reckon.