dry eyes: Hi everyone, I have lupus sle and have... - LUPUS UK

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dry eyes

SufferingMike21 profile image
26 Replies

Hi everyone,

I have lupus sle and have such dry eyes which I have different eye drops I have.

my question. I have had plugs put into tear ducts to help but eyes are more uncomfortable than before and slight sight change???

has anyone else had plugs and what was there opinion of them

thanks Mike

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SufferingMike21 profile image
SufferingMike21
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26 Replies
Suvi8901 profile image
Suvi8901

A most helpful website for those suffering Sjögren’s disease:

bssa.uk.net

Suvi8901 profile image
Suvi8901

For further information, please contact:

British Sjögren’s Syndrome Association, PO Box 15040, Birmingham, B31 9DP

Tel: 0121 478 0222

Email: office@bssa.uk.net originalText

Helpline: 0121 478 1133 Registered charity no. 1101571

SufferingMike21 profile image
SufferingMike21 in reply toSuvi8901

Thankyou so much for your reply I have been told I have sjogrens I will give them a ring for further advice rgds Mike

SufferingMike21 profile image
SufferingMike21 in reply toSufferingMike21

Hi also reading other sjogrens symtems on the link I have most of them and 8 years ago also had lymphoma it's been tough, as it has for so many others thanks again Mike

Suvi8901 profile image
Suvi8901 in reply toSufferingMike21

Sorry to hear but the general consensus here is that once you’ve got one “form” of autoimmune, inflammatory disease, they’re all “knocking on the door” .

With me it’s DLE to SLE to lupus nephritis and now I’ve got to the point of shouting at those aberrant immune system cells, “Leave me alone!”.

Yes, no cure but all we can wish for is good management of all our unpleasant symptoms and some sort of inner peace?

Hope the lymphoma is in remission?😰

All the best.

SufferingMike21 profile image
SufferingMike21 in reply toSuvi8901

Yes in remmision 🙂wish you well with your health

Pippydo profile image
Pippydo

Hi there, I suffer from Sjorgrens, lupus and LIP, I’ve got plugs in my tear ducts to help with dry eyes but am still constantly putting drops in, the only thing I’ve noticed is that I no longer get eye infections so they must be doing some good! Every time I go for eye test I ask them to check plugs are still in place. Keep going and hopefully you will notice a difference. All the best to you!

SufferingMike21 profile image
SufferingMike21 in reply toPippydo

Thankyou for your advice and plugs work for you. I will persist with them until my next appointment to see how things go I may not have give them long enough to see results

Mike

Looplylady profile image
Looplylady

Sorry to hear you are suffering...I have the same problem I use systane x4 a day & Xailin at night, I also find it blurs my vision for a while afterwards. Keep going Mike

SufferingMike21 profile image
SufferingMike21 in reply toLooplylady

Thankyou for your reply I will keep going. Hopefully your eyes are ok

Lily77 profile image
Lily77

Yes I have just come across someone with very dry eyes for whom the plugs did not do enough and kept falling out and she has been able to have a further op on the NHS which has improved things hugely. So if the plugs and drops don’t work for you there are other options.

SufferingMike21 profile image
SufferingMike21 in reply toLily77

Thankyou I'll shall persist until next appointment in a few weeks and I shall ask options with consultant. Rgds Mike

Lily77 profile image
Lily77 in reply toSufferingMike21

Yes, if it is not working and making your life miserable…keep complaining…vigorously if necessary.

SufferingMike21 profile image
SufferingMike21 in reply toLily77

Shall do thankyou

Lizard28 profile image
Lizard28

I noticed the difference right away, they were really good for me, although the first ones she put it were too small so she took them out and tried a bigger one and really pushed it in. I get my eyes checked every six months at the ophthalmology clinic at the hospital. I occasionally put xailin night in at night. I’ve also had lymphoma and now lupus. They must all be linked.

SufferingMike21 profile image
SufferingMike21 in reply toLizard28

Hi thanks for reply, yes I definitely think connected when you read articles. I didn't realise there were different sizes of plugs maybe that's a possibility thankyou keep well rgds Mike

alija1001 profile image
alija1001

I too have lupus and have dry eyes I spoke to someone at the hospital and they recommended Hypromellose eye drops

SufferingMike21 profile image
SufferingMike21 in reply toalija1001

Thankyou for your reply I have those eyedrops ready to collect tomorrow from pharmacy. We can see how things go Rgds Mike

alija1001 profile image
alija1001 in reply toSufferingMike21

Did you get them on prescription cos I got mine on Amazon

SufferingMike21 profile image
SufferingMike21 in reply toalija1001

No mine are on prescription. Picking up from pharmacy tomorrow give them a try Mike

gemim profile image
gemim

Hello Mike, I have SLE & Sjogrën’s with very dry eyes. Got eye plugs put in 6 months ago. One in my left eye stayed in and has given me great relief from the dryness. The plug on the right eye has come out twice. On both occasions it felt really uncomfortable before it came out. I was conscious of it all the time which was never the case in my left eye. Wonder if your plugs are not fitting snugly enough and moving around a bit before eventually falling out. They should not cause a sight change so if the discomfort continues it would be best to gets eyes checked with optometrist or try to get back in touch with the ophthalmologist. Trust you get some relief soon. Gemin

SufferingMike21 profile image
SufferingMike21 in reply togemim

Hi Gemin thanks for your reply glad yours are ok now, yes I will get checked its funny just a small bit of blurring and sore thanks again Mike

Tykle profile image
Tykle

Hi Mike, I have SLE and Sjogren's and have had plugs for a few years, although they have occasionally come out and needed to be replaced. You shouldn't be able to feel them at all. I couldn't feel much of a difference with them but am sure they will be helping to keep the eyedrops from draining away too quickly. The best drops I've ever had, which actually worked until I developed an allergy, were Ikervis (cyclosporine) . I now have Ilube, hylo night and hylo forte, which make it just about manageable. I hope you find something that works for you.

SufferingMike21 profile image
SufferingMike21 in reply toTykle

Hi thanks for your reply, one of the 3 lots of drops I take is hypo forte which helps short term..rgds Mike

Tykle profile image
Tykle

Glad it helps a bit. The hylo night gel is good as it lasts a bit longer.

SufferingMike21 profile image
SufferingMike21 in reply toTykle

Thankyou 👍

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