IPL at Univ of MI - Ann Arbor Kellogg Eye Center

[edmunder]

Well extremely bad news and very good news.

Bad news: I stopped steroids and my oil completely thickened. If i press very hard i get a little. After a warm compress it looks good. Otherwise nothing. I had a manual expression and it was lots of thick oil and a little thin oil.

That means the IPL wasnt doing anything for me. It was all just the lotemax gel steroids.

So Im back at step 1. After months of trting things, nothing works except steroid drops. Lipiflow, IPL, lid scrubs, hypocholoric acid, tea tree oil. Lid debridement, manual expression.

End result is zero progress with the MGD. Im going to get a counselor asap.

Not sure what to do now. Continue to ise lotemax every other day and get oil or stop and let it all thicken into toothpaste again?

I used the steriod drops for 3 weeks 2-3 times a day. 2 weeks 1 time a day. 2 weeks every other day. Then 2 weeks every 3rd day. Now i tried every 4th day. It stopped working.


Good news: I went to Dallas for the Dr G laserfit sclerals and they are amaxing. I wore them 10+ hours today. Great day. But i just looked in the 20x mirror to get oil. Nothing.

But even with zero oil comfortable all day.

Im pretty depressed about the mgd though.

I think I will try to see Jain in Chicago at UIC.

[Guest]

I’m sorry the steroids were the only thing working. I am hopeful that because your issue is related to inflammation, and you respond to steroids, if you get a diagnosis, I think you can get back to a more normal life. My hope is that Jain can figure it out, but I don’t doubt the guy in the slightest. Which is extremely rare for me.

Super glad the lenses worked out, you needed a win. Sounds like you have a tool to help you function better, at least for now. Can’t wait to see what happens at you initial visit. You’ll get A LOT of information that day. Good luck and glad to hear youre doing better. You literally sound better based on the writing in your post.

[edmunder]

Im not as hopeful to be honest. After studying everything available and talking/listening to many hundreds of people discuss what worked for them... Ive tried everything. There isnt any treatment or pill I havent tried except Prokera and that is not my issue. Ive read the literature. Im at the pray for medical advancement in the future phase.

Ive also done blood serum, azithromycin, doxycycline, 30+ kinds of vitamins/supplements.

Maybe I have a rare autoimmune disorder. But then what? There are no cures for them.

So im very happy about the lenses but the thought that i havent made any headway with every available mgd treatment has me about as dark as it gets.

[hopeful_hiker]

edmunder I am so glad that scleral lenses help you. I think perhaps at this point you can maintain your glands as healthy as you can through compresses/ipl/Lipiflow (since their effects don’t last forever) and enjoy the comfort of scleral lenses. Maybe eventually you will find something good for your glands. Doxy maybe?

Either way, mediocre signs but low discomfort is better then the other way around in my opinion.

[deep_dry_eye]

How many rounds of IPL did you do? You might be a case that needs a few more rounds of IPL.

I am on a monthly IPL regime, and I definitely believe IPL to helps.

[MGD1701]

BlephEx is worthy to try - only make sure to find a skillful tech./doctor.
not just clean lashes but lid margin (debridement) to remove (years of) biofilms - which we can not achieve by ourself at home.
unfortunately most doctors under appreciate its value, some doctors say.

I did recently for the 1st time (dr said for debridement) - I do feel better but not sure if it is from BlephEx.
I actually found one dr with BlephEx last year but she said I did not need it as my lids/lashes were so clean & no demodex...etc.
But now I very sure that her knowledge is limited/not up-to-date, after more reading - there are more new articles on this issue now -
following explains pretty well.

''Lash follicles
Not long after the entire lid margin is covered with biofilm, the lash follicle becomes the first structure to be affected by excess bacterial biofilms and associated toxins because of the follicle’s easy access and small size. When the biofilm progresses into the lash follicles, folliculitis ensues. This is a subtle clinical finding that can be easily missed on cursory anterior segment examination if not appropriately assessed.

The lash follicle manifests a volcano sign in which the skin surrounding the lash follicle is elevated with edema (Figures 2A and 2B). Many times pallor is noted as well, especially in darker-skinned patients. This is due to an “activated” toxin-producing bacterial biofilm that is present within the follicle.

As the biofilm thickens around the base of the lash, small pieces begin pull loose from the main layer due to the growing lash. The main layer of biofilm extends back across the entire lid margin, but it is nearly invisible due to its translucence and tight adherence to the lid margin.''

from Dr Mile Brujic, Sept. 26. 2018
Know the four stages of dry eye blepharitis syndrome: Page 2 of 4

http://www.optometrytimes.com/dry-ey...drome/page/0/1

[Guest]

edmunder - I'm so sorry that the IPL does not seem to be working. But the sclerals are a big win for the moment. Have you considered probing?

[Milo007]

BlephEx is worthy to try - only make sure to find a skillful tech./doctor.
not just clean lashes but lid margin (debridement) to remove (years of) biofilms - which we can not achieve by ourself at home.
unfortunately most doctors under appreciate its value, some doctors say.

I did recently for the 1st time (dr said for debridement) - I do feel better but not sure if it is from BlephEx.
I actually found one dr with BlephEx last year but she said I did not need it as my lids/lashes were so clean & no demodex...etc.
But now I very sure that her knowledge is limited/not up-to-date, after more reading - there are more new articles on this issue now -
following explains pretty well.

''Lash follicles
Not long after the entire lid margin is covered with biofilm, the lash follicle becomes the first structure to be affected by excess bacterial biofilms and associated toxins because of the follicle’s easy access and small size. When the biofilm progresses into the lash follicles, folliculitis ensues. This is a subtle clinical finding that can be easily missed on cursory anterior segment examination if not appropriately assessed.

The lash follicle manifests a volcano sign in which the skin surrounding the lash follicle is elevated with edema (Figures 2A and 2B). Many times pallor is noted as well, especially in darker-skinned patients. This is due to an “activated” toxin-producing bacterial biofilm that is present within the follicle.

As the biofilm thickens around the base of the lash, small pieces begin pull loose from the main layer due to the growing lash. The main layer of biofilm extends back across the entire lid margin, but it is nearly invisible due to its translucence and tight adherence to the lid margin.''

from Dr Mile Brujic, Sept. 26. 2018
Know the four stages of dry eye blepharitis syndrome: Page 2 of 4

http://www.optometrytimes.com/dry-ey...drome/page/0/1

Excellent post.

[edmunder]

Thank you for the suggestion.

But i dont think thats the issue. I use occusoft lid scrubs. Hypocholoric acid. And have had lid debridements. The doctor told me my lids look perfect. I also used tea tree oil for a while to kill possible demonex mites.

Also the closest blephex treatment is in Chicago or north of Detroit. Both 4+ hour drives one way from me.

Now its getting to be winter time and I have no interest driving all day with the heater on for a lid debridement.

Im not sure what I will do next.

I should probably make an appointment with Dr Jain in Chicago. Today I laid in bed all day and cried.

I was in perfect health. I don’t understand where this inflammation is coming from.

There must be some kind of cellular change from taking Accutane that damaged my body.

At this point it feels hopeless.

Nothing has thinned the oil except steroids. Using them I dont need to do hot compress. Lots of oil.

When I stop steroids. Even using hot compress it becomes no oil after a week. Zero. Then the intense pain comes.

[deep_dry_eye]

Thank you for the suggestion.

But i dont think thats the issue. I use occusoft lid scrubs. Hypocholoric acid. And have had lid debridements. The doctor told me my lids look perfect. I also used tea tree oil for a while to kill possible demonex mites.

Also the closest blephex treatment is in Chicago or north of Detroit. Both 4+ hour drives one way from me.

Now its getting to be winter time and I have no interest driving all day with the heater on for a lid debridement.

Im not sure what I will do next.

I should probably make an appointment with Dr Jain in Chicago. Today I laid in bed all day and cried.

I was in perfect health. I don’t understand where this inflammation is coming from.

There must be some kind of cellular change from taking Accutane that damaged my body.

At this point it feels hopeless.

Nothing has thinned the oil except steroids. Using them I dont need to do hot compress. Lots of oil.

When I stop steroids. Even using hot compress it becomes no oil after a week. Zero. Then the intense pain comes.

I wouldn't worry about giving BlephEx a try, IMO, its just a glorified lid debriment that any optometrist can do with the golf club tool. My ex-IPL dr does BlephEx for free, however, I don't think its effective at all, esp if you have clean lid margins.

How many rounds of IPL did you do?

[Guest]

Thank you for the suggestion.

But i dont think thats the issue. I use occusoft lid scrubs. Hypocholoric acid. And have had lid debridements. The doctor told me my lids look perfect. I also used tea tree oil for a while to kill possible demonex mites.

Also the closest blephex treatment is in Chicago or north of Detroit. Both 4+ hour drives one way from me.

Now its getting to be winter time and I have no interest driving all day with the heater on for a lid debridement.

Im not sure what I will do next.

I should probably make an appointment with Dr Jain in Chicago. Today I laid in bed all day and cried.

I was in perfect health. I don’t understand where this inflammation is coming from.

There must be some kind of cellular change from taking Accutane that damaged my body.

At this point it feels hopeless.

Nothing has thinned the oil except steroids. Using them I dont need to do hot compress. Lots of oil.

When I stop steroids. Even using hot compress it becomes no oil after a week. Zero. Then the intense pain comes.

No MGD treatments really worked for me either and that’s what I was diagnosed with. I do have some gland dysfunction that I’m sure will always remain. For me however, the gland dysfunction wasn’t the disease, it was a symptom of a greater problem. Like you said, you could have something else going on. And then what you ask...then maybe you can target your treatment at the problem rather than bandaging the MGD. I could be wrong, you could be at the end, but I wouldn’t bet on it.

You may have done everything for MGD...your problem may not be MGD. That’s all I’m saying. I was in the same place as you (kind of) when I went to Jain. The only reason I went was because I needed serum and my other doc lost his phlebotomist. So I’m thinking, I’ll get my serum and get the **** out of here. Then he diagnosed me right and things got better. I’m on a drug I’ve never even heard of before so again, I don’t think you’ve tried everything.

So let’s say you’re ****ed, lets just be honest here, your glands are trashed worst case scenario and won’t recover, now what? You can still use sclerals. I don’t have that option and out the gate you could wear them 10 hours. That’s a big win because now at the very least, even if the MGD cannot be helped at all (I don’t believe that), you have a better way to live regardless. So In my mind, I think you’ve made a leap ahead, way past where you were.

So let me say again, I think you can live a better life. Better than what you assume is possible. I’ve said what you said a hundred times over. In my opinion that’s from the mental (and physical) beating we take every day we’re in pain. I’m just happy to hear you still want to pursue seeing Jain. I think he will help you, I think you think that too. Good luck man. I know you and Dano have had some serious problems here, including myself. So it’s been a long time coming for you to get an answer.

[edmunder]

I wouldn't worry about giving BlephEx a try, IMO, its just a glorified lid debriment that any optometrist can do with the golf club tool. My ex-IPL dr does BlephEx for free, however, I don't think its effective at all, esp if you have clean lid margins.

How many rounds of IPL did you do?

I did 3 rounds.

My issue: As soon as I get more than 4 days from steroids the oil thickens.

I did my first IPL and it caused intense inflammation. I was near suicide. I got out my steroids and felt good. Got lotemax from my doctor and felt MUCH better.

When I did Lipiflow it caused so much inflammation. I was taking tramadol all day and still in pain. Then I got steroids and felt much better.

Its the only thing that has helped.

I still have a half bottle and a refill for another bottle. I dont know what I will do when they are done.

[hopeful_hiker]

There will be advancements for sure.
For instance, you say steroids help. A new cyclosporine drug (Cequa) is now approved by the FDA. It sits on the eye surface longer then Restasis so it may be just potent (0.09%) enough to start chipping away from the inflammation.

As for symptom management and sclerals. I am always distracted and tired, especially when it goes on for a while. However, when I get pain-free days, I feel better and can focus on other things besides eyes. Maybe by stepping away from the disease for a bit by wearing sclerals will allow you to notice something in terms of MGD.

I also forget, did you look into hormones? DHEA helped some people here plus I’ve come across some studies on this topic.

[Hokucat]

Given steroids help your inflammation, I believe there will be other solutions that can reduce inflammation for you, without the side effects steroids do. It may be another prescription drug, it may be diet changes, a combination of these, etc. I took steroid eye drops on and off over several years, and now I have early cataracts which recently have gotten a little worse, so may need to have cataract surgery one day which will likely make my dry eyes worse, which really worries me. This other solution(s) you find may be something that is not known to typically help MGD/dry eyes, because as you and Dowork mentions, your MGD may be a symptom of another underlying problem, which can be many.

The lemon juice in green tea giving me the most material relief of anything is an example. My doctors now seem to agree drinking the lemon/tea somehow works for me systemically, resolving inflammation likely due to an autoimmune condition, but am still testing negative all these years. Although I found the lemon/tea myself through trial and error of various diet changes, I got a thorough education/clues on diet and other alternative treatments from seeing a naturopath M.D. early on. It was through my naturopath where I received amino acid shots, which made my eyes feel like I didn't have an eye problem at all for a few days, that gave me the clue finding the right diet changes could help me. I'd highly recommend looking into seeing a naturopath with an M.D., so they can also order tests and prescribe medications, often those that typical medical doctors do not do, if needed.

It is so fortunate that you can wear your new sclerals 10+ hours a day already! It could have been where you were not able to tolerate sclerals at all. So at least you can have comfort during the day, while continuing on your request to resolve your underlying condition. Plus wearing sclerals may also help your eyes feel better when you're not wearing them. Someone I know might go see Dr. G. How many days did you need to stay in Texas?

Definitely at least keep up the warm compresses in the meantime since you say it helps thin your oils at least temporarily, otherwise you might later develop stubborn blockage and/or scar tissue where you would need probing, and glands can possibly atrophy.

[Guest]

Given steroids help your inflammation, I believe there will be other solutions that can reduce inflammation for you, without the side effects steroids do. It may be another prescription drug, it may be diet changes, a combination of these, etc. I took steroid eye drops on and off over several years, and now I have early cataracts which recently have gotten a little worse, so may need to have cataract surgery one day which will likely make my dry eyes worse, which really worries me. This other solution(s) you find may be something that is not known to typically help MGD/dry eyes, because as you and Dowork mentions, your MGD may be a symptom of another underlying problem, which can be many.

The lemon juice in green tea giving me the most material relief of anything is an example. My doctors now seem to agree drinking the lemon/tea somehow works for me systemically, resolving inflammation likely due to an autoimmune condition, but am still testing negative all these years. Although I found the lemon/tea myself through trial and error of various diet changes, I got a thorough education/clues on diet and other alternative treatments from seeing a naturopath M.D. early on. It was through my naturopath where I received amino acid shots, which made my eyes feel like I didn't have an eye problem at all for a few days, that gave me the clue finding the right diet changes could help me. I'd highly recommend looking into seeing a naturopath with an M.D., so they can also order tests and prescribe medications, often those that typical medical doctors do not do, if needed.

It is so fortunate that you can wear your new sclerals 10+ hours a day already! It could have been where you were not able to tolerate sclerals at all. So at least you can have comfort during the day, while continuing on your request to resolve your underlying condition. Plus wearing sclerals may also help your eyes feel better when you're not wearing them. Someone I know might go see Dr. G. How many days did you need to stay in Texas?

Definitely at least keep up the warm compresses in the meantime since you say it helps thin your oils at least temporarily, otherwise you might later develop stubborn blockage and/or scar tissue where you would need probing, and glands can possibly atrophy.

I agree completely, something I was also trying to say but couldn’t properly get across. That the fact you are helped by anti inflammatory drugs, is a positive sign.

May I ask a question about your steroid use? Something that’s been bugging me. Your pressure was being checked during this time I assume. May I ask, did your pressure jump or elevate at all while on steroids? I guess I’m afraid that even with good pressure, steroids may be doing some damage. Just curious if there were warning signs to the early cataracts or not.

Thanks, hope you’re doing well!