Scleral lenses advisable for dry eyes?

[Hokucat]

Hi Rick, thanks for the update. Were the lenses not that clear because she didn't have a sample close enough to your prescription? It is a good sign you were able to read with more comfort than usual having the sample lenses on.

Yes, it's totally normal to feel the lenses in your eyes given they are big, hard lenses! Everyone is different, and over time or on certain days, the condition of your eyes may change making the lenses more or less comfortable. When I initially got mines, it took me a couple weeks and trying a few things before I was less aware the lenses were in. These are the things that helped with the comfort:
1. Putting two drops of Tears Naturelle preservative-free artificial tears in each lens before filling the rest with saline.
2. While wearing the lenses, periodically I would lift my upper eyelids and put three drops of the Tears Naturelle above the lens edge across the white sclera, and similarly under lower lids below the lens edge, then blink a few times so it covers entire eyeball. This method worked better for me than simply putting the drops on top of my lenses, likely because with my method the drops "filled in" where the lens edge rested on my sclera to provide some cushion.
3. Drinking lots of water.
4. Taking rx pill Evoxac (generic name cevimeline), which helps gives extra moisture to eyes and to mouth.
5. Blinking exercises and even yawning helps!

As I mentioned earlier in this thread, after six months I started having problems wearing the lenses and had to stop wearing them for a few years, but I believe it was likely because my autoimmune disease was getting worse, not due to the lenses.
Now I can wear the lenses 12+ hours a day and don't need to put drops in anymore while wearing them, but still do the other three items. And I usually forget I have the lenses on, except at the end of the day when I've used my eyes most of the day reading or using computer. Likely you eating candy or chewing gum will help moisten your eyes with lenses on if it does now, and that should make the lenses more comfortable too.

I was trained to insert and care for the lenses in one appointment, but have heard of others taking longer. Heck, for $2,000 per training session, I'd make sure I could do it before I left the first session! Seriously, I think besides training, the additional appointments also covers additional fittings if needed to get the lens size/shape/comfort right for you. Dr. Chiu answers emails, maybe you can ask her about that. Without insurance, it is a big out of pocket cost when you don't know for sure if it will work. I wonder why Dr. Chiu cannot use the Schimer as proof to insurance you need the lenses? I hope your insurance comes through!

Maybe its worthwhile for you to go for a consult for the EyePrintPro lenses at UCLA, since the lenses are custom molded to your eye from the start? I thought I saw in another post it was ~$3,500 total, but you have to file insurance claim your self. Did you ask Dr. Chiu about the EPP lenses?

Thanks again for the update, Rick. Will cross my fingers it all works out.

[Rick]

Hi Hokucat,

I really appreciate the info. I used Salagen, which I think is similar to Evoxac (still have some) but that never worked for me. It increased salivation (which I didn't need) but did not reach my eyes. Having said that, I suspect that my problem is also due to an autoimmune problem. I have chronic fatigue syndrome which I developed over 20 years ago. There is mounting evidence for autoimmune involvement.

The way I see it is I probably don't have a choice but to give the lenses a shot regardless of what happens with the insurance. I forgot to mention the EPP lenses during my visit but I can always bring that up on the next one.

The "training" that Dr. Chiu mentioned must have been for just one day, as you say, and the rest the lens fitting. I just couldn't remember all the details.

So now it's just waiting to see what happens next, starting with the insurance. I'm attempting one more thing before jumping in, which will be tested quickly. It has to do with minor convergence insufficiency (when the eyes do not align properly when reading, etc...) and its relationship to dry eyes. A couple of optometrists believe it's a major cause of the dryness (presumably, the brain strains to merge the images from the two eyes and there must be neural feedback to the tear glands). I actually asked my optometrist to run some tests and we discovered my eyes are slightly misaligned. Weird. You would never know because it's completely invisible. And of course you would never know unless you tested for it. So I'm working on a new pair of sunglasses that will include prisms to see what happens. I'm not holding my breath on that one. There is no solid research to back it up that I know of, and it's largely anecdotal. But this belongs to another topic.

In our cases, we can't afford to leave any stone unturned.

I'll post again when I have any meaningful updates.

[Hokucat]

Hi Rick. Another option for sclerals that might be less expensive if insurance does not pay are the BostonSight Sclerals (as opposed to the PROSE lenses through providers like Dr. Chiu), being rolled out by BostonSight starting this month to optometrists outside the PROSE system. Sounds like this will make Boston's lenses more widely available and affordable. Here's the press release Rebecca sent out in her Feb. 22 newsletter, in case you did not see it:

http://nn.nnchamber.com/news/details...tem-01-25-2017

I wonder if your insurance DOES pay, would they also cover these sclerals and then your out of pocket costs could be even less than with PROSE! Anyways just wanted to mention this option...

[Rick]

Wow, thanks, Hokucat. This is definitely useful info. And yes, I believe the insurance would normally pay for the lenses. Seems Dr. Chiu should know about this. I'll bring it up after we find out what the situation is with the insurance.

[Hokucat]

Hi Rick. This week I have an appointment with Dr. Chiu to update my lenses. I'm going to ask her about the BostonSight Sclerals and EPP sclerals. Have you been back to see her since your initial visit?

[Rick]

Hi Hokucat,

I'll be seeing her at the end of the week (Friday, Apr 14). Sounds like you'll be there just before me. Let me know what she says about the EPP lenses. When I called the office they were telling me that she is only trained in the PROSE lenses. This time around, we'll be doing a second evaluation to see if the physical symptoms are present to convince the insurance. They denied coverage last time. She had submitted a claim for the same type of lenses she had let me try out -- I don't believe they were the PROSE lenses, and now I'm blanking on the name for them. In any case, the other option would be the PROSE lenses which they said would be a LOT more expensive (or was that the Boston lenses -- sorry, I'm confused among all the lenses now!). I'm told that the company carries their own insurance but I'm pretty sure I wouldn't qualify. So this would imply thousands out of pocket.

The catch is that you really need at least a week to see if the lenses will work but you only have under an hour to test them out before you commit. So it's a tough proposition.

Hope you have a productive visit with Dr. Chiu!

[Hokucat]

Hi Rick. Just came back from seeing Dr. Chiu.

Regarding BostonSight Sclerals, for me she said best to stick to Boston PROSE lenses because 1) the lenses I have are not one of the 22 lens BostonSight Sclerals set, 2) my current PROSE lenses work for me very well, and 3) she would have to fit me again for the BostonSight Sclerals and charge me a fitting fee. But I think for a new patient like you, this might be a less expensive route to go if not the PROSE lenses. Or perhaps the other brand she had you try on last time. So ask about it.

As far as EPP sclerals, she said those were best for people who had irregular shaped corneas or bulges where PROSE or other standard sclerals won't work. She has referred a few people to UCLA to get these. But she also said some patients are bothered by the process to take the mold of their eyeballs, and sometimes it's not possible to make lenses from a patient's mold, so they cannot get the lenses, and they still lose some of the costs. She said EPPs cost about $3,600 per eye, and at least at UCLA, she heard they do not take insurance for this. Am guessing one can file the paperwork themselves to insurance though.

Good luck at your appointment this Friday, I hope your eyes show the evidence needed for insurance to cover It!

[Rick]

Hokucat, sorry about the delay in responding. And thank you for the info. As usual, you're being very helpful. It's nice to meet others with similar issues. I don't know anyone around me who has this problem as severely as I do. Sometimes, it makes me feel like a freak I will keep everyone updated on my progress with Dr. Chiu after I see her in a couple of days. I'll make sure to ask about the BostonSight Sclerals. Either way, I think I have no choice but to commit to something, even if the cost is out of pocket. There's no options left at this point!

[Hokucat]

Yes, good to know we are not alone in all this, but you're right, personally I don't know anyone nor have seen anyone either with the level of dry eye severity we've experienced.

Given the trial lenses enabled you to read the news on your cell phone when you usually cannot without a lot of discomfort, and you could tolerate the lenses, those are certainly good signs the sclerals will likely help you. The degree to which it helps is unknown, but making things better than they currently are is always good.

I thought at one time I was told if the patient has to pay for it all out-of-pocket, they give a little discount.
Don't quote me on that, but it's worth asking for.

I and other scleral users in this forum will be happy to help you with tips to make the sclerals more comfortable, once you get them. Rebecca also had several great tips in one of her recent KeratoScoop e-mails. Hope all goes well, Rick!

[Rick]

Well, after my visit yesterday, we unfortunately had to conclude that I'm not a good candidate for the scleral lenses. I couldn't tolerate them well enough to justify the expense. They felt just like contact lenses felt decades ago when I finally had to give them up. I'm also "atypical" in that I still would not display any of the physical symptoms you would expect from a patient with dry eyes. I still think it's because my dryness is conditional. They can feel just fine if I'm not engaged in reading, TV watching or driving. Yet, I wake up with eyes so dry that one of my eyelids is literally stuck to my eyeball, and at times if I don't nurture them, after just a few minutes of reading they'll feel like sandpaper. What makes sense to me is that I must have evaporative dry eyes, and that they dry up with sustained attention (reading, driving, etc...). Yet even forcing myself to blink at a faster rate doesn't seem to make a difference (?). I've also considered eye allergies, it doesn't seem that it would explain why reading or driving would make them dryer. Dr. Chiu suggested that I may have a type of corneal neuropathy (a nerve dysfunction that cause pain). But since I don't experience pain continuously, I doubt it. I do experience significant inflammation in the eyelids after continuous reading, and have some blepharitis that I treat on a daily basis with cue tips and baby shampoo. Maybe the problem is just MGD (which would be consistent with evaporative dry eyes). So back to the drawing board!

Having said this, I would highly recommend Dr. Chiu to anyone living in LA area. She's awesome as optometrists goes, very smart, very personable and energetic.

I want to thank you, Hocukat for all the info you provided. Dr. Chiu did mention you as she knew you and I had already had been in discussions about this.

[Hokucat]

Hey Rick, am sorry it turned out you cannot tolerate the sclerals, but am glad you and Dr. Chiu concluded this now rather than after incurring the costs of these lenses and being disappointed. However, I still feel your disappointment and literally had tears in my eyes as I read your post...

For a few years when my eyes were at their worse, I could not tolerate wearing sclerals, but once I got a little better was able to wear them again. So perhaps it's still an option for the future.

We'll have to continue putting our heads together and reaching out in this forum to find relief for you. Although the surface of your eyes don't show the symptoms of dryness, earlier on you mentioned your Schirmers are low and you do say you have problems when using your eyes driving, watching tv, reading, etc. and inflammation. Is your TBUT also low? When you did the LipiView evaluation prior to doing LipiFlow, did it show poor tear quality? Have any of your doctors examined your meibomian glands (by at least pressing on them, or examining with special equipment) to confirm the oil was thick or sparse, or that your glands are blocked or atrophied? If so, that would confirm MGD, and things like gland expression, IPL, and probing (if glands totally blocked) could help...was not sure if you tried any of these procedures before. I know you mentioned earlier you had tried just about everything.

Corneal neuralgia is a possibility like Dr. Chiu mentioned, but I tend to agree with you based on what you just wrote that you have some MGD going on, so perhaps check this out first.

You mentioned you have blepharitis...doing a baby shampoo lid scrub or certain other commercial lid scrubs won't remove the bacteria. I noticed a big difference when I started using Ocusoft Lidscrub Plus Foam, which addresses the bacteria. Rebecca sells it in her Dry Eye Shop and it's a very competitive price. Perhaps give this a try. For me the foam works way better than the wipes version:

https://www.dryeyeshop.com/mobile/oc...nser-p210.aspx

Diet changes could also help your oils flow, especially if you suspect the cause of MGD/blepharitis is autoimmune disease. But likely need to unblock glands first, or no diet changes or treatments may help.

Hang in there, there's still more options and new treatments continue to come out.

[Rick]

Hi Hokucat,

Thank you for the empathy! I'm used to failure addressing dry eyes, so I didn't raise my hopes too much. What saves me is eating/sucking on candy, which instantly proved relief by moistening my eyes in a manner that eye drops don't. It's strange. Of course, I can't eat or suck on candy all day long, so I reserve this for when I need to do anything involving sustained attention.

When I had lipiflow, I was in fact told that my glands only produce a third of the oil I should be producing. At another examination by another ophthalmologist, I was told my tear breakup time was short. I also had the glands examined and was told many had atrophied. Another exam showed the oil to be "chunky". So all this confirms MGD I think, despite the fact that my tear film may often look normal.

I had tried IPL with no success. Interesting though, that the Ocusoft scrubs worked for you. I had used the wipes in the past and saw no improvement, although maybe I should try the one you mention here. I tried Avenova for a month and didn't notice a difference.

I had my glands expressed -- that hurt but it didn't work. I wonder if probing might. I had wondered about this before but don't know of anyone who actually does this.

Seems it's like a full time job just addressing this problem LOL

[Hokucat]

Hi Rick. If you want to try probing at some point, I can give you the contact info of the doctor who did my last three probes. Like expression, it is not a comfortable procedure, but learned a lot about the state of my glands from having it, and it was the precursor for me getting better following with the daily lemon/tea.

I used to wake up with my eyelids stuck to my eyeballs too. I don't know what your night time regimen is, but what helped me was right before bed doing the Ocusoft Lid Scrub Plus, ThermalOn warm compress, drinking a cup of water, putting in something long lasting like Genteal Severe Eye Gel or Systane Ultra drops, and wearing TranquilEyes moisture goggles to sleep (in that order). Then as soon as I wake up drinking another cup of water and forcing a few yawns before I open my eyes, and within less than a minutes I would feel some moisture in my eyes. Even though my eyes are better now, I still do this process, sans the warm compress and Genteal/Systane.

Given your eyes feel moisture when you eat candies, sounds like they are definitely affected by your salivary glands. Does chewing gum help? I know earlier you said you tried Salagen, but that just increased your salivation and did nothing for your eyes. You may want to try Cevimeline (the Evoxac generic) instead, since it's a different active ingredient than Salagen, and my rheumatologist told me Cevimeline worked better than Salagen for many of his patients in giving moisture to their eyes. However, he said many of his patients' insurance did not cover Cevimeline. This does make my mouth have more moisture, but I got used to it, plus since it gave more moisture in my eyes too, that was the top priority.

Ok, time to sleep now. Had a long but fun day having family over for an Easter Egg hunt and dinner...gotta enjoy this while my kids and their cousins are still young! Hope you had a nice weekend.

[Rick]

Yes, I'd love to have the info for that doc who does the probing. I'm a bit far from LA though (closer to San Bernardino), so I may have to look someone up in my area. I'll also look into Cevimeline and see if that helps. My insurance covered the Salagen so I'm hoping it will also cover the Cevimeline. Leave no stone unturned!

I just tried the Ocusoft Foam version (Platinum). Too early to tell. If I leave the foam in, it causes a bit of irritation. You apparently can either leave it in or wash it off. I think I'll just wash it off!

Hope all is well.

[Hokucat]

Hi Rick. Check your PM. I sent you the contact info of the doctor who did my last three probe procedures.

My eyes are very sensitive to different lid scrubs too. I am not using the Ocusoft Platinum version, just the Plus version. But yes, since you have that already try rinsing it after. I rinse with PuriLens preservative-free saline after doing the lidscrub. If that doesn't help, try the Ocusoft Plus Foam (non-platinum) version.

Hope you are able to try the Cevimeline. Even if you have to pay for a small supply to try it if insurance does not cover it, it might be worth seeing if it works.