Any Advice on Trying Sclerals for a First Time?

[faithfully]

I am a 48 yr old female d/xed with Sjogrens.My eyes went completely dry over three years ago. My schiemers test was zero in both eyes. I was put on Restasis and havent stopped. I have also tried cautery, plugs, every drop, get and oinment on the market. I have even done the autologus blood drops and not to forget Lotemax and Alrex. I do the warm compresses twice a day.I also use Lacriserts from time to time. I am on Evoxac and have tried Salagen. I am also on neurontin to help with the burning in my eyes and lips therefore one doctor thinks some neuropathy may be going on? Must mention too from learning on here I have tried the honey. NOt sure how to use the Aloe Vera but would try it if I knew exactly how to use it?
So my Corneal Specialist is now sending me to the Boston Foundation to try the Sclerals. I have read the posts on here. I see where they help some and some they dont. I did where RGP for 34 years and now have to wear glasses.
My eyes are always painfully dry and burn.
My question is does anyone think Sclerals could work for me and do they come with the correction so I would no longer need my glasses?
Any advice is much appreciated

[calli66]

Sclerals do come with correction.

I don't wear them, but have considered them. I have Sjogren's like you, and used to wear soft contacts until 3 years ago.

The problem I had with contacts is that because of the Sjogren's, my eyes make lots of debris from inflammation, and the lenses would get this crud on the inside--so much that I would have to remove them and wash it out several times a day just in order to see. And the presence of this debris caused my eyes to react and stay permanently inflamed.

My question about sclerals is this: is debris a problem? I wouldn't want to make my eyes more inflamed. I had thought that maybe this was only a problem with absorbent lenses (soft lenses). Any scleral wearers here have this problem with deposits on their lenses?

Calli

[CaptainObvious]

I am a 48 yr old female d/xed with Sjogrens.My eyes went completely dry over three years ago. My schiemers test was zero in both eyes. I was put on Restasis and havent stopped. I have also tried cautery, plugs, every drop, get and oinment on the market. I have even done the autologus blood drops and not to forget Lotemax and Alrex. I do the warm compresses twice a day.I also use Lacriserts from time to time. I am on Evoxac and have tried Salagen. I am also on neurontin to help with the burning in my eyes and lips therefore one doctor thinks some neuropathy may be going on? Must mention too from learning on here I have tried the honey. NOt sure how to use the Aloe Vera but would try it if I knew exactly how to use it?
So my Corneal Specialist is now sending me to the Boston Foundation to try the Sclerals. I have read the posts on here. I see where they help some and some they dont. I did where RGP for 34 years and now have to wear glasses.
My eyes are always painfully dry and burn.
My question is does anyone think Sclerals could work for me and do they come with the correction so I would no longer need my glasses?
Any advice is much appreciated

Well,

One indication of scleral lenses is dry eyes. So, I would recommend to you to have a try. You will lose nothing if you wear it. The lenses will to keep your eyes bathed in a liquid medium and it will reduced your burning sensation and all other complaints of dryness. Plus the most important issue which is the frequency of dropping in your eye. It is going to be minimized significantly.

Regarding the debris, use more viscous drops to fill the lenses that will make the debris accumulation frequency is less. Try to wipe the external surface of the lenses because the debris more likely to be on the out surface.....




Good luck

[DCRdryeye]

Sclerals do come with correction.

I don't wear them, but have considered them. I have Sjogren's like you, and used to wear soft contacts until 3 years ago.

The problem I had with contacts is that because of the Sjogren's, my eyes make lots of debris from inflammation, and the lenses would get this crud on the inside--so much that I would have to remove them and wash it out several times a day just in order to see. And the presence of this debris caused my eyes to react and stay permanently inflamed.

My question about sclerals is this: is debris a problem? I wouldn't want to make my eyes more inflamed. I had thought that maybe this was only a problem with absorbent lenses (soft lenses). Any scleral wearers here have this problem with deposits on their lenses?

Calli

A suggestion about the "debris" concern with sclerals. Have you heard about "fenestrated" sclerals? They are ventilated and don't have the problem of debris accumulation. I've tried them, but didn't persist as long as I should have. It's a consideration for you... I don't think they are as expensive. Here in Australia the price is $1,200 per fenestrated scleral lens...made with the same material as any top quality scleral lens.

[Rebecca Petris]

Faithfully, I wish you the very best with this. I think personally you have a relatively high probability of success. It should be possible with the trial lenses to determine before the full fitting process whether it will really tackle the burning etc.

My question about sclerals is this: is debris a problem? I wouldn't want to make my eyes more inflamed. I had thought that maybe this was only a problem with absorbent lenses (soft lenses). Any scleral wearers here have this problem with deposits on their lenses?

Calli

Calli, I would have the same problem with soft lenses. I do not with BSLs. - The exception is that when I get a mild flare-up of my GPC, which affects mostly my left eye, that eye gets a lot of mucous which will stick on the lenses (never underneath though) and I'll have to rinse and clean them more often. In practice these days if that starts happening I just take it out and cut down my wear time till the GPC backs off.

I know several people who have debris issues. Small but noticeable proportion of all those I know with sclerals. Seems to me like the debris problem in certain cases is related to the precision of the fit, because I hear about this more with commercial lenses than truly custom lenses.

[faithfully]

Thanks everyone for your advice concerning Sclerals. I have an appt. this THurs. July 8th at the Boston Foundation for Sight. I will let all know whether or not they work for me. Praying they will. It has been a long three plus years of extremely dry eyes with burning. I do five to six procedures daily just to get some relief.

[calli66]

Rebecca, thanks for the feedback about sclerals and debris. I would love to be able to wear my Panoptyx again, and get some better vision than I have now. It's interesting that you say that the debris doesn't get UNDER the lenses---that's a good thing.

I can't justify BFS lenses, because my dry eye symptoms are fairly well controlled. But maybe some low-end sclerals....I don't know. I may email Dr. Gemoules and ask some questions about his custom sclerals. If I remember right, you tried those, but they didn't work for you, is that right?

C

[Rebecca Petris]

But maybe some low-end sclerals....I don't know. I may email Dr. Gemoules and ask some questions about his custom sclerals. If I remember right, you tried those, but they didn't work for you, is that right?

C

His are anything but low-end sclerals I have never tried any scleral type lens with DrG. I wore smaller lenses he designed for me many years ago - bear in mind the problem I was trying to solve was vision not dryness -and they worked very well for a long time, till the size became an issue for me. I've never personally experienced DrG's more recent lens technology breakthroughs as I was in BSLs already when he made those advances.

[calli66]

Thanks, Rebecca...I have emailed Dr G---will see what he says and go from there.

Happy 4th!

C

[faithfully]

I just got back this week from a two week stay at the BFS. i am grateful to say that after 12 pairs of lenses finally the 19mm were the ones that worked I am able to wear them most of the day. They do get a little hazy. I do use both the Celluvisc and the Unisol to help with this.
For the first time in three years I can go outside with the wind blowing and not be miserable as well as in a.c....havent tried the heat yet. My three year headache is actually gone today!
My right eye still burns a little.....thinking maybe some corneal neuropathy is going on b/c my lips burn too? Would like to hear if anyone else out there has these symptoms and what helps? I have been d/x with Sjogrens.
Trying Neurontin for this but after seeing the SJS patients at the clinic am now for cautious about drugs.
Thanks to this site and for the advice from many here about the Sclerals I have found what works.
My doctor was so patient. Would love to give out his name if am allowed?
Would highly recommend sclerals for those of you who have tried everything and are still miserable with dryness. it is worth selling the farm if you have to.
All but two of the many patients I saw up there in the two weeks walked out without any pain! THis is an answer to prayer I even witnessed blind people being able to see for the first time!
Hope this encourages someone out there.

[DG65]

...... THis is an answer to prayer I even witnessed blind people being able to see for the first time!
Hope this encourages someone out there.

It sure does.

[diggylove]

Boston lenses at L.A. location anyone?

Has anyone had Boston lenses made at the L.A. (Doheny) location? I live in this area so I obviously prefer exploring this avenue over Boston..but all the "press" I read here is about the excellence of the Boston facility. Has anyone gone to Doheny? I received an email packet of info they sent, which talked heavily about cost, but very little about the lenses...certainly not about the drawbacks. They are trying to get me to go for a consult, which includes a first fitting, but I'm hoping for responses here first. I have what I consider severe MGD...I produce virtually no oil & have a TBUT of about 1...for which IPL, amongst many other things, has not helped one bit. I am miserable...in constant burning pain. The lenses appeal to me in general, but I would like to know if anyone here has gotten them at Doheny...pro, con, whatever?? My eye doctor calls them a last resort...he suggest long-term antibiotics, which scare me. Please share...thanks!

[Tdwax]

I am in the process of training at the LA Doheny site. The lens are made and feel good when inserted by them. Currently I am training to put them in myself, which is difficult. USC Doheny Eye Center is top notch in my assessment. I would recommend having a consult.

[ICANSEE]

I just got back this week from a two week stay at the BFS. i am grateful to say that after 12 pairs of lenses finally the 19mm were the ones that worked I am able to wear them most of the day. They do get a little hazy. I do use both the Celluvisc and the Unisol to help with this.
For the first time in three years I can go outside with the wind blowing and not be miserable as well as in a.c....havent tried the heat yet. My three year headache is actually gone today!
My right eye still burns a little.....thinking maybe some corneal neuropathy is going on b/c my lips burn too? Would like to hear if anyone else out there has these symptoms and what helps? I have been d/x with Sjogrens.
Trying Neurontin for this but after seeing the SJS patients at the clinic am now for cautious about drugs.
Thanks to this site and for the advice from many here about the Sclerals I have found what works.
My doctor was so patient. Would love to give out his name if am allowed?
Would highly recommend sclerals for those of you who have tried everything and are still miserable with dryness. it is worth selling the farm if you have to.
All but two of the many patients I saw up there in the two weeks walked out without any pain! THis is an answer to prayer I even witnessed blind people being able to see for the first time!
Hope this encourages someone out there.

Hi, Faithfully

I am so happy to hear that you were able to go to the Boxton Foundation for Sight. I have had Sjogren's since 1977, the pain had disabled me so much, as well as the probability that I would soon be blind (my eyes were crisp), so dried out! My doctor was in Boston on business and heard about BFS and brought the literature back for me. She completed the tests and report of my desperate situation to BFS and they advised me I was a candidate.

33 years of pain and it is gone. I use the lenses with the Unisol 4 and I am still using Lotemax 2 x day. I can drive my car again. I am less photosensitive, although I do wear sunglasses on suny days. I have no regrets except I wish I had known about BFS sooner. Check out their video on Facebook, it explains everything. I hate to take the lenses out...keep them in for 12 or more hours a day. The doctors, trainers and everyone at BFS are wonderful people. I, too, saw "miracles"...people who were in constantd pain were made painfree and the blind were given back their sight!
Stay blessed
Ginny

[faithfully]

Thanks Ginny for your post. It encouraged me again in wearing my Sclerals. I was having a hard time with them....my eyes were getting drier and they were becoming very uncomfortable.
I would love to hear from someone like you on how to cope with this awful disease...Sjogrens. I cant imagine having it as long as you have and having a positive attitude. I've been d'x for over three years and there have been days many of them that I just didnt think life was worth it. It isnt just the eyes either. With it all comes such depression.
But then when I read a post like yours it sure gives hope
Thanks,
Faithfully and trying to be