I have Sjrogrens... despite frequent use of prescribed drops and eye gels, and having silicon plugs inserted into my tear ducts

[L1zzy]

I still continue to experience extremely dry eyes which are often sore, blood shot and inflamed. I've just been referred by the optician to the eye clinic at the local hospital, but unless the plugs have fallen out, which they haven't, I expect there's not a lot they can do. Can anybody share how they cope with these symptoms please?

[L1zzy]

... I also have RA and Vasculitis. When Vasculitis flares-up, I feel run down, even more tired than usual and I get something similar to blood blisters on my elbows, knuckles and finger joints... my eyes seem to be worse at this time. Does anyone know of a connection? Can Vasculitis affect your eyes?

[dmc12]

Hi,

I have not been diagnosed with Sjrogens but have the same as you described and have had silicon implants in my tear ducts for the last year. Mine have not dropped out as my tear ducts are very narrow re dry eyes. I was given a test of some eye products that are working well for me. I use Hi Lo Forte, Hidro Tears, and lacrilube on a night timer and this seems to be working for me. Don't be afraid to push if your regime is not working for you.

p.s. my specialist advised me to stop wearing all make up around my eyes as this can aggrivate it.

Good luck

Donna

[L1zzy in reply to dmc12]

Thanks dmc12, I previously had a problem with the silicon plugs coming out, until they fitted ones designed like a raw plug which thankfully have remained in place. After reading replies and info on website, it seems to me the flare-up with my eyes is connected to Vasculitis, the rest of the time the drops keep Sjrogrens at bay. I use Viscotears and Artelac Nighttime Gel... and yes, make up aggravates my eyes too.

[Tillytop]

Hello,

So sorry you are having such horrible problems with your eyes. I too have Sjogrens related very dry eyes and have tried many of the eye drops and creams and punctual plugs. The punctal plugs just keep falling out and the eye consultant has recommended I have minor eye surgery to cauterise the tear ducts which apparently can really help. He told me that it can actually cause the opposite problem of runny eyes but thought that my eyes were so very dry this was unlikely. So maybe your eye doctor will be able to suggest something similar for you if its appropriate. I don't know which drops you use but the ones I find work best for me are Hylo Forte. They are thicker than some of the other drops I think. I use Lacrilube at night - and in the day too sometimes if needed. For a short time I had a different cream called Duolube and it was really good for me but it was too expensive for the doctor to prescribe long term unfortunately.

Really do hope you get your eye appointment soon and hope the eye doctor can help.

Tilly x

[L1zzy in reply to Tillytop]

Thanks Tillytop, I will discuss the possibility of surgery when I see the eye specialist. I haven't come across Hylo Forte or Duolube. I use Viscotears and Artelac Nighttime Gel, as I found Lacrilube too heavy and my eyes were puffy in the morning. With RA I have difficulty administering drops and the gels are easier, but it does leave me limited to what I can use. I have read the NRAS page on Vasculitis and eyes, and I think the flare up is linked to Vasculitis.

[fossil321]

I have RA,Sjogrens and also suffer Blepheritis, I have been taking hydroxychloroquine for a year now and this helps with the dryness of my eyes and mouth. It is not perfect but it really helps. I also bath my eyelids with bicarbonate of soda (1tsp dissolved in a pint of hot water, let it cool slightly or you can use it cold), all you do is just wipe down the eyelid.

[L1zzy]

Thanks, I'll try the eye bath. I'm on Enbrel, and Mtx for RA and Prednisilone for Vasculitis, neither seems to be enough in a flare-up of Vasculitis. I use Viscotears and Artelac Nighttime Gel for Sjogrens and I also have Blepheritis. I haven't heard of Hydroxycholoquine before, I was just given a spray for dry mouth. I was really looking to see if Vasculitis affected the eyes and now I know it does... which helps

[Dogrose]

I have secondary Sjorgren's and my eyes tend to be dry these days but not too bad, in fact I can't remember the last time I used drops. I'm on Infliximab infusions, Infliximab is particularly good for people with eye problems. It got rid of my scleritis pretty quickly. XXX