Sjogren's - Punctal plugs or Ciclosporin drops? - LUPUS UK

LUPUS UK

26,728 members22,712 posts

Sjogren's - Punctal plugs or Ciclosporin drops?

lupieibbie
lupieibbie

Does anyone have experience of both of these treatment options for very dry eyes and, if so, which would you recommend?

Thanks.

23 Replies
oldestnewest

Have had the plugs several times - no luck, have also had cauterized- no luck- also Lipiflow treatment at $1500 USD - no luck. I have tried Restasis( cyclosporine) No Luck. Would love a solution. Everyone thinks I am crying all the time...😭

LH44
LH44 in reply to Mks9558

Are you on Hydroxychloroquine? That helps mine too.

Several years ago my NHS ophthalmology cornea specialist decided punctal plugs carried to much infection risk in my case (due to simultaneous systemic lupus & primary immunodeficiency disease am at extra high risk) so he tried me on ciclospirin (Ikervis) which is agreeing with me & doing a v good job of damping down my chronic AID-related cornea inflammation.

I’m relieved not to have had to try punctal plugs because have heard so little that’s made me think that in my case the benefits would outweigh the risks. Meanwhile i’m monitored closely by my consultant because he says v few patients have been on daily Ikervis as long as i have, and my history of connective tissue malignancy puts me at some degree of risk that long term ciclosporin might contribute to giving me an ocular or sinus connective tissue cancer.

🍀🍀🍀🍀 Coco

Hi, I tried plugs but to no avail, they dropped out. I am was on Cyclosporin until I had them cauterised and it worked really well for me.i have since had all my tear ducts cauterised and it has been am utter godsend. I'm also using daily eye drops to help when needed.

I agree with you on cauterizing being a Godsend.

Have had the plugs and they just fall out.

Hidden
Hidden

My plugs haven’t fallen out so far and it’s been a year now. My friend’s have lasted for several years from same hospital. My information was that there are many different types of plugs designed for short or long term use.

The ones I have are silicone and clearly a good design for my eyes- and the ophthalmologist who put them in chose a tight fit in order that they wouldn’t drop out, which they haven’t. Nor am I aware that they are there but any optometrist can check and they are.

I still have to use drops several times a day and ointment at night but not hourly most of the time now. I still have flare ups when my eyes are bad as well as everything else.

But on the whole I think plugs are better for me than chemicals - particularly because I’m very diligent about using hyloforte and VitApos and have known chemical sensitivities.

I’m not sure why you’re being given this choice through? If your eyes are already damaged by sicca then wouldn’t you need to try both?

lupieibbie
lupieibbie in reply to Hidden

Actually, the only thing on offer at the moment is punctal plugs but I want to be more informed before my appointment and knew I could get lots of info on HU.

Hidden
Hidden in reply to lupieibbie

Just ask for the permanent ones - they work okay for me so far (a year) and are certainly no problem at all. Worth a shot at least? But do remember to keep using your drops and ointment/ gel too

lupieibbie
lupieibbie in reply to Hidden

I'm literally pouring hyloforte into my eyes, with Xailin as a back up through the night. All to no avail!

LH44
LH44 in reply to lupieibbie

If you're lacking the oil layer of tears it's good to do heated eye mask for 10mins & eye massage each night too.

lupieibbie
lupieibbie in reply to LH44

Thanks for the reply LH44. I already use a heated eye mask.

LH44
LH44 in reply to lupieibbie

If you haven't got one already, I use the eyelid massager by 'Eyepeace' straight after...

lupieibbie
lupieibbie in reply to LH44

Thanks for the tip. 👏 I've never heard of an eyelid massager but I can feel some serious googling/retail coming on .....

LH44
LH44 in reply to lupieibbie

Don't think it does much but I think worth doing directly after heated mask ☺

Hidden
Hidden

It depends on the type of plug and on the shape of eyes and on the skill of the eye doctor who inserts them.

Mine are silicone and made to last for a long time (many years at least) and have never fallen out.

Perhaps yours were the dissolving variety which are only used for short term sicca or to check that the person will benefit? .

Most punctal plugs for people with Sjögren’s are designed to last.

LH44
LH44 in reply to Hidden

Yes, same apart from lost one last year which was replaced but had them 4yrs.

I actually had my lower tear ducts cauterized, (permanently shut) and this helped immensly- one of the best decisions I ever made. I also do the temporary puntual plugs (collegen I believe) on the upper ones. I am actually considering cauterizing those as well but will weigh it out based on the fact that is is rather permanent. I do the temporary plugs on top because the ananatory of my upper duct is such that the plug does not fit in all the way and the collegen are much more comfortable.

I’ve been on Restasis for about a year. It has been great. I Dr said it would be uncomfortable in the eye. But it’s not bad at all. Only use lubricating gel a couple times during the night a & couple times during the day. Used to be about every hour. No other treatment method was ever mentioned to me. Good luck.

I use Refresh Celluvisc lubricant eye gel.

Thank you all you lovely people here for your replies. Lots to read and consider before my next eye appointment. Be prepared is always the best motto .....

Mine were so dry I ended up with both, been a long time like this. Punctal plugs first then Ciclosporin (but that was more for inflammation which is a big cause of dryness).

lupieibbie
lupieibbie in reply to LH44

These mega eye problems coincide with a Lupus flare, so I guess it's all connected ..... lucky me!

You may also like...