Punctal plugs versus Cyclosporin
Posted , 11 users are following.
Since my November experience where I was rendered functionally blind for three days due to epithelial tissue loss from my eye due to dryness, I have been seeing Ophthalmologists every two to three weeks.
Two visits ago, one Ophtha was about to insert punctal plugs but after a quick look said my ducts were too small, so he started me on Cyclosporin eye drops. Last week another eye doctor at the hospital said he wasn't a fan of Cyclosporin and at my next visit they would insert punctal plugs. He didn't look at the ducts nor did I prejudice him by saying the ducts were too small (according to one Ophthalmologist).
Personally I would prefer the punctal plugs as Cyclosporin is yet another pharmaceutical which needs to be remembered twice per day. It stings like crazy after installation and it costs on a regular basis - every 30 days.
However I'd really appreciate hearing from anyone who has had either, and hear of your successes/failures.
0 likes, 20 replies
aitarg35939 Megheart
Posted
Sorry, no advice to share, Megheart. Just wanted to say I'm sorry for what's going on with your eyes,,, and with docs.
amkoffee Megheart
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I have the plugs. I've personally noticed no difference but my eye doctor swears that my eyes are not dry anymore since the plugs were installed and I'm on Restasis as well. That was my ophthalmologist. I just recently changed my eye doctor and my new eye doctor only wants to see me once a year even though I have dry eyes. This has me a little bit concerned because I think I should be check every six months if not even more often.
maureen05275 Megheart
Posted
Hello Megheart.
You have my greatest sympathy. My opthamologist (same one since 1989) said once that deep problems within the eyes do not hurt but superficial ones do (I have a tendency to corneal abrasions) and quite apart from the blindness, you must have been in a great deal of pain. My dry eyes were diagnosed in 1983 but I had had problems for a decade before that. I tried the Restasis in 2005 but got no relief from it then; in fact, I felt it made my eyes feel drier. I have read that others have found Restasis very helpful. My feeling was that it would be helpful to those who had high levels of inflammation. I have the insidious type of Sjogren's, no doubt with severe inflammation in the early years (15 years before diagnosis) but then low and relentless. Apparently it was a bit of a pain for the opthamologist to get the Restasis here in Australia at the time - regulations or something - and he refused to do the paperwork to get another batch so that was the end of that. I have never had plugs. Once the opthamologist said one duct looked as if it had closed over and he didn't want to touch it. On my most recent visit, however, when I said that I knew my eyes had dried further during a most stressful 2017, he said at least they were taking 5 secs rather than 2 or 3 secs in the dryness test he does and we still had things up our sleeve, i.e. punctual plugs and stitching half the eyelids closed to reduce evaporation. I said I would just have to hope I died before the stitching became necessary. He looked rather taken aback but these days I tend to tell it as it is! At present I just manage using Polytears, Bion Tears and Systane during the day (the former for washing out the eyes, the second because it is preservative free, the third when I can manage with slightly blurred vision) and Polygel (thickest) at night or if I feel a corneal abrasion may be starting.
I hope this has been of some help to you. Dreadful thing, painful eyes. Frightening thing, blindness. Best of luck.
Maureen
Megheart maureen05275
Posted
Thankyou aitarg, amkoffee and maureen,
Yes the episode I had was incredibly painful and the other eye stayed closed in sympathy....I think it's called blepharospasm.
I was told in 2012 that I had only 1mm and 2mm of tears from my eyes and to use drops twice per day but this had never really been updated, although my optometrist did keep an eye on the situation. So when this event happened in November it came out of the blue.
Now I am on hourly Polygel in both eyes and an ointment at night called HPMC PAA (Australia). I have tried an assortment of ointments but this is the only one which has not caused a feeling like my eyes are full of grit!
So amkoffee you have both plugs and Cyclosporin (Restasis). How does the Ophthalmologist know which one is doing the job of helping you? Perhaps it is a combination of both.
i certainly do not want a repeat of the November episode and I now have a new respect for 'dry eyes'.
amkoffee Megheart
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amkoffee maureen05275
Posted
Can you tell me why in the world would your ophthalmologist work so hard to get you a box of Restasis if he wasn't going to keep getting it for you? Did he think that one box would be enough to cure you? Well it didn't matter because it didn't work for you any way. And I guess back then it was a plus since you weren't going to be getting any anyway.
I had dry eyes for several years before I started prednisone. I'm still on prednisone and will probably be on it for several years. I take it for another autoimmune disorder I have that has a symptom of inflammation. So your theory about inflammation might just be correct.
maureen05275 amkoffee
Posted
Hello amkoffee
I first heard of Restasis through my own research and I asked my eye doctor if I could get it. He initially agreed but reluctantly. I have just gone through my records and, being an inveterate hoarder, found a consent form I had to sign where I acknowledged that cyclosporine eye drops were not approved for sale by the Australian government. At the time the drops had been approved for use in the USA and my doctor had "obtained a Special Access Scheme approval number whereby you are able to use this therapeutic good". The form had to be signed by the doctor, me and a witness so I guess it was all a big deal. I was not given just one box; there were at least half a dozen in that first batch. I have been on prednisolone at various times over the years but now, with osteoporosis and severe lumbar problems, I feel very hesitant to ask to go back on it even if anyone would allow it. My rheumatologist refused to consider putting me on any anti-inflammation medication until I had a lip biopsy then when that came back at level 1 of 4 still refused to put me on anti-inflammation medication. That was 11 years ago and the dryness has increased slowly but relentlessly over that time just as it did in the 35 years before that - eyes, mouth, throat ... The eye doctor never considered anything other than drops. I have so many problems I doubt the GP even registers that I have Sjogren's and certainly does not think it a big deal (or anything else wrong with me for that matter). Sorry if I sound negative; I've been ill for so long, am without family and am just so tired fighting the system and having to do everything myself. I have read your writings often and know you have a lot to deal with yourself. Best wishes amkoffee.
Megheart amkoffee
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amkoffee Megheart
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It's either .4 ml or .04 ml. I can't remember which it is. right now I am out of it and cannot afford to fill my prescription for a little while. I am really hoping I'll be able to fill it in two weeks when my husband gets paid again. I just used up my last so I'm just going to use the OTC eye drops until than.
amkoffee maureen05275
Posted
Well it sounds like the two of us are in the same boat. And you're right about doctors not even recognizing SS. My rheumatologist does recognize my diagnoses and she has tried to treat my symptoms. She let me try to different prescriptions for dry mouth and one of them made me nauseous and the other one only worked so-so and was very expensive so I opted to not take it anymore. I am glad that the Restasis is working for my eyes but my eye doctor that originally prescribed it for me did not offer it for years. He is very holistic and I was taking omega-3 at his recommendation and it was working fine until I got on Prednisone for polymyalgia rheumatica (another autoimmune disorder.) Once I started the prednisone my eyes got particularly dry and that's when he finally suggested Restasis. I have fired him and will not see him again. He let me down in a lot of ways in the 15 years I saw him.
maureen05275 Megheart
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Megheart, I didn't know that Restasis comes in different strengths. The drops I tried back in 2006 were 0.05% so that may be why I found they did not help.
christine26761 Megheart
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Feeling for you precious...stay strong..no one really knows what we go through..sending gentle hugs..be blessed ..have a lovely day wherever you are..💐💐💐😘
Megheart christine26761
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Thank you Christine, how sweet of you! The flowers are lovely! 👌🏼
mandy95 Megheart
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I had my first set of plugs put in when I was 29 years old and they lasted until I was 53 and I certainly noticed the difference when they have come out I’ve since had another set of plugs put in and would not be without them they made such a difference with my eyes I’m also on the cyclosporine which is made a huge difference for my eyes that also I would not be without so give both a try and hopefully you will see an improvement in your eyes.
Best wishes,
Mandy
lily65668 mandy95
Posted
Thanks for this Mandy. I'm having my first serious flare-up of dry eyes in 22 years of SS, and am in a lot of pain, especially in the night, as well as having blurred vision in the worst-affected eye. I've got an ophthalmologist appointment coming up so will try and discuss all this.
mandy95 lily65668
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My last flare with the eyes was 2 years ago. Had no serious flares since the Punctal plugs were reinserted, and was put on Ikervis drops at nighttime only. Yes the drops can sting sometimes but they are so much better.
Good Luck,
Mandy
Megheart mandy95
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Thank you Mandy. That is amazing 24 years they stayed in!! Did they fall out of their own volition or were they removed?
That's very encouraging indeed!
Megan
mandy95 Megheart
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