Tried everything still suffer? Possible causes by Dr Mark Milner

[mbperso]

MGD1701 ,

Thanks for this treatment explanation. That's what we should have had when we visited doctors.

BlephEx
I found out doctors who practise this tool and I wonder if I have to use it.
Which symptoms and diagnosis involve using BlephEx ?
Given MGD and demodex do you think I should do it ?

Pure HOCL
When do you use it , I mean after heat & expression? how many time a day ? just spray or using a cotton ?

Restasis
I've never been prescribed Restasis for MGD. Did you try it ?

[MGD1701]

BlephEx
just like a 'deep' cleaning of eyes (like visit dentist to clean teeth) to remove biofilm, bacteria load. I think it should help you, as when one has demodex, more bacteria present as well. Famous Dr John Hovanesian said in 2017 that 75% of his patients repeat it - it means it helps, I assume.

Pure HOCL
When: when wake up spray to closed eyes, (sometimes) after expression (mostly with q-tip)
1-3 times a day
Just play around see what work better for you. Avenova produces many useful videos.

Restasis
None of 15 doctors ever prescribed me. I wish they did - to stop progression.

[deep_dry_eye]

BlephEx


Restasis
No doctors ever prescribed me. I wish they did.

You need to be proactive and ask for it, dont assume the drs know better than you. Most are not dry eye experts. Ask for Xiidra as well, I am on both Restasis and Xiidra BID, my dr claims my oil quality has improved significantly since then.

[MGD1701]

Thanks deep_dry_eye.
Dont think I need restasis as my eyes have been pretty fit.

[deep_dry_eye]

Thanks deep_dry_eye.
I dont need restasis now as my eyes have been pretty fit.

Symptoms may not be correlated with clinical signs. Restasis/Xiidra can still help you. Don't just think about your eyes Today, think about your eyes 10 yrs from now.

[Guest]

Symptoms may not be correlated with clinical signs. Restasis/Xiidra can still help you. Don't just think about your eyes Today, think about your eyes 10 yrs from now.

I think you should use the least amount of drugs, drops, wipes, etc. as possible. That way, when things get worse, you have tools in your tool belt with which to attack them. I'm on restasis, warm compress, avenova, and serum 8xday...this is the minimum required for me to function. I still have xiidra, doxy, azasite, lotoprednol, gels, ointments etc.

if this could be cured, I would agree, let's take out the nuclear bomb to kill the mosquito. Make sure it doesn't come back. But this disease, at least in my mind, is a marathon. It's progressive, so that always lingers in he back of my mind...what about the future.

I think if we focus on the root root causes of our issues, we would get better. Example, I've been sleeping with my eyes open. Had no clue, til I had a few erosions, then my doc said, you sleep with your eyes open. So once I addressed that, it changed everything. So I'm sitting here thinking, what's the next drop I can take or procedure I can do, and it was as simple as my eyes were open all night.

Now if you feel you need everything you take to function, then take it. We all have to choose for ourselves what type of comfort and care we desire.

This is is a great thread by the way.

[deep_dry_eye]

I think you should use the least amount of drugs, drops, wipes, etc. as possible. That way, when things get worse, you have tools in your tool belt with which to attack them. I'm on restasis, warm compress, avenova, and serum 8xday...this is the minimum required for me to function. I still have xiidra, doxy, azasite, lotoprednol, gels, ointments etc.

if this could be cured, I would agree, let's take out the nuclear bomb to kill the mosquito. Make sure it doesn't come back. But this disease, at least in my mind, is a marathon. It's progressive, so that always lingers in he back of my mind...what about the future.

I think if we focus on the root root causes of our issues, we would get better. Example, I've been sleeping with my eyes open. Had no clue, til I had a few erosions, then my doc said, you sleep with your eyes open. So once I addressed that, it changed everything. So I'm sitting here thinking, what's the next drop I can take or procedure I can do, and it was as simple as my eyes were open all night.

Now if you feel you need everything you take to function, then take it. We all have to choose for ourselves what type of comfort and care we desire.

This is is a great thread by the way.

I don't disagree with what you just said. It is unclear whether to hit it with the nuclear bomb option is better, or save the nuclear bomb for later. i.e., it is unclear whether usage of drugs will make the disease resistant to the drug(s). I would be vary of any statement that concretely states it 1 way or another -- i.e., we dont have the data (i.e., Xiidra is new) or we don't have the long term data (i.e., what happens to patients after 10 yrs of restasis usage) and its probably different per patient (i.e., some patient hit nuclear bomb is better, while others may not be and become drug resistant).

Focusing on the root cause is a good strategy, however its difficult to find the root cause. The argument for hitting it with the nuclear option is under the theory that dry eyes are caused by an (endless) inflammation cycle, hitting it with the nuclear bomb option may help break you out of the inflammation-cycle.

A lot of it is just guessing game, and even if you take action A vs action B, and whether it did help or didnt help you, its unclear whether such action A or action B was the correct action. The best we can do is share stories, share anecdotal evidence, and try and make the best decisions possible.

It really sucks because.

[Guest]

I don't disagree with what you just said. It is unclear whether to hit it with the nuclear bomb option is better, or save the nuclear bomb for later. i.e., it is unclear whether usage of drugs will make the disease resistant to the drug(s). I would be vary of any statement that concretely states it 1 way or another -- i.e., we dont have the data (i.e., Xiidra is new) or we don't have the long term data (i.e., what happens to patients after 10 yrs of restasis usage) and its probably different per patient (i.e., some patient hit nuclear bomb is better, while others may not be and become drug resistant).

Focusing on the root cause is a good strategy, however its difficult to find the root cause. The argument for hitting it with the nuclear option is under the theory that dry eyes are caused by an (endless) inflammation cycle, hitting it with the nuclear bomb option may help break you out of the inflammation-cycle.

A lot of it is just guessing game, and even if you take action A vs action B, and whether it did help or didnt help you, its unclear whether such action A or action B was the correct action. The best we can do is share stories, share anecdotal evidence, and try and make the best decisions possible.

It really sucks because.

For me it's this, if I throw everything at my eyes, how will I know what's working? Why take a potentially dangerous drug forever if it's not working? Now, when I was doing really bad if you told me this, I wouldn't care. I just wanted relief. I wish things would have happened faster, but the fact that we slowly added things, this allowed me to see what was really working.

Now, you can break the inflammation cycle with a nuclear bomb...but if you don't treat the underlying cause, the inflammation comes back. So again, you took a course of drugs for what..Temporary relief?

As far as this being a guessing game...depends on who you are or who you ask. I've met doctors that had no clue what was going on. Then I met my current doctor and it's like he's watching me in my house he's so dead on. He's addressed every problem I have...I have a few more doors I want to close, demodex, allergies, Rosales...I just haven't asked him about these. But I'm sure there's a reason he hasn't suggested tea tree oil or allergy drops. I'll let you know on the 26th for my follow up.

But for us, yes, it's a guessing game. I have a minor in biology and chemistry and opthamology is a very very hard subject to grasp. I think doctors also only treat signs yet we want our symptoms treated. My doctor even now said, you don't look that bad. But I feel bad man! How can you say I'm fine and I'm totally messed up? It's a heart breaking...hopeless feeling.

It sucks that life gave gave us this hand. It hurts me every day that my life has changed so much. In ways I didn't even know. I went to book a hotel today...I asked if they could bring up a microwave to the room for medical reasons. They said they couldn't...so I can't do my compress...so I can never stay in that hotel. That's harsh...to see your world shrink. I get it man...I'm sorry you're dealing with this also.

[deep_dry_eye]

For me it's this, if I throw everything at my eyes, how will I know what's working? Why take a potentially dangerous drug forever if it's not working? Now, when I was doing really bad if you told me this, I wouldn't care. I just wanted relief. I wish things would have happened faster, but the fact that we slowly added things, this allowed me to see what was really working.

Now, you can break the inflammation cycle with a nuclear bomb...but if you don't treat the underlying cause, the inflammation comes back. So again, you took a course of drugs for what..Temporary relief?

"potentially dangerous drug forever if it's not working", the class of drugs Xiidra/Restasis are in are considered low risk. You can google and ask your dr if you don't believe me.

Agreed you need to treat the underlying cause of the inflammation, but these drugs can help you do that as well.

As far as this being a guessing game...depends on who you are or who you ask. I've met doctors that had no clue what was going on. Then I met my current doctor and it's like he's watching me in my house he's so dead on. He's addressed every problem I have...I have a few more doors I want to close, demodex, allergies, Rosales...I just haven't asked him about these. But I'm sure there's a reason he hasn't suggested tea tree oil or allergy drops. I'll let you know on the 26th for my follow up.

But for us, yes, it's a guessing game. I have a minor in biology and chemistry and opthamology is a very very hard subject to grasp. I think doctors also only treat signs yet we want our symptoms treated. My doctor even now said, you don't look that bad. But I feel bad man! How can you say I'm fine and I'm totally messed up? It's a heart breaking...hopeless feeling.

It sucks that life gave gave us this hand. It hurts me every day that my life has changed so much. In ways I didn't even know. I went to book a hotel today...I asked if they could bring up a microwave to the room for medical reasons. They said they couldn't...so I can't do my compress...so I can never stay in that hotel. That's harsh...to see your world shrink. I get it man...I'm sorry you're dealing with this also.

Not to discredit your doctor, I've personally visited 10+ different drs (across 3 countries) before I found my dr as well. Don't be afraid to find more dry eye specialists and get different opinions. The field is rapidly changing lately, and a lot of it is still exploration. The true underlying cause of the disease is yet to be understood, we're only beginning to scratch it's surface, until it is understood, no matter how big of an expert, their opinions are stochastic and not deterministic.

And yes, I need to travel this month -- I'll probably be forced to skip my warm compress routine for a month as well.

[deep_dry_eye]

But for us, yes, it's a guessing game. I have a minor in biology and chemistry and opthamology is a very very hard subject to grasp. I think doctors also only treat signs yet we want our symptoms treated. My doctor even now said, you don't look that bad. But I feel bad man! How can you say I'm fine and I'm totally messed up? It's a heart breaking...hopeless feeling.

BTW, pehraps I also have a similar case, my signs do not match the level of my symptoms. I spoke to several drs about this, they claim this is becoming a common thing and the root cause is unknown. I'm meeting a ophthalmology fellow for coffee next wk, I'll report back his thoughts and opinions later. Some drs have told me it is theorized to have something to do w/ the nerves as opposed just the ocular cornea surface.

I have virtually no staining but my symptoms don't match. The treatment strategy my dr put me on to help curve my nerves are Prokera, autologous, restasis, xiidra and monthly-IPL.

[Guest]

"potentially dangerous drug forever if it's not working", the class of drugs Xiidra/Restasis are in are considered low risk. You can google and ask your dr if you don't believe me.

Agreed you need to treat the underlying cause of the inflammation, but these drugs can help you do that as well.



Not to discredit your doctor, I've personally visited 10+ different drs (across 3 countries) before I found my dr as well. Don't be afraid to find more dry eye specialists and get different opinions. The field is rapidly changing lately, and a lot of it is still exploration. The true underlying cause of the disease is yet to be understood, we're only beginning to scratch it's surface, until it is understood, no matter how big of an expert, their opinions are stochastic and not deterministic.

And yes, I need to travel this month -- I'll probably be forced to skip my warm compress routine for a month as well.

listen, its clear you want to handle your treatment a certain way. I prefer caution, especially when taking medications. You're right, we don't know...so why roll the dice if it's not necessary?

again, I never said don't use drugs. They are very beneficial. But relying on drugs rather than lifestyle change is unwise. Meaning, if you can achieve more comfort through lifestyle change, why use a drug? I'm not saying don't use drugs, I'm saying use them sparingly. Minimum amount necessary for improvement.

so you said you don't know the cause of your dry eye, I know mine...problem is half the lost I can't fix...too late.

-16-22 contact lenses (rejected lenses at 22)
-flash burns from welding (at least 3 in my life)
-college 250+ credit hours (7 years) reading text in books and on computers
-Video games since 8 years old up until I was 27. I was ranked highly in a few online games.
-I smoke a lot of weed for 20 years
-I was a bodybuilder that took a lot of exogenous hormones
-heavy computer use for last 5 years.
-started having dry eye and MGD about 3 years ago but had almost no symptoms.
-got dust in my eyes, scratched corneas, eye injury.
-I have basement membrane dystrophy, didn't find that out until the injury. Some of my dry eye feelings are related to this basement membrane dystrophy...it's ocular surface disease as well as dry eye. So it's not black and white per say.

It wasnt until the injury that I was in real trouble. The eye injury was made worse by my dry eyes. I've had dust get into my eyes before no issues. This time, my eyes were so dry, I didn't have tears to clear away the debris. So having mild dry eye basically created the injury. That's why it makes me mad that my last two eye exams no one expressed my glands, or caught the mild inflammation. Had I started compresses and drops before the injury, the injury most likely wouldn't have happened.

So i'd say I have a pretty good grasp on what caused all this...problem is what do I do now?

[MGD1701]

This is unusal case but maybe someone are interested in reading?
------------------------------
Dry Eye Gone Awry

When you try every topical therapy in the book and still can’t get resolution, you may need a systemic agent—and an ally in another field.

Edited by Paul C. Ajamian, OD

Q: I have a Sjögren’s disease patient with a dry eye flare up and complications. No topical treatments have helped. What’s next?

A:

“I saw this patient for irritation and burning in both eyes about a year ago,” says Brian Den Beste, OD, of LASIK Pro Eye Consultants in Orlando. The patient, a 62-year-old Caucasian female who Dr. Den Beste had seen on and off for significant dry eye and narrow angles, had a long-standing history of Sjögren’s disease and chronic fatigue syndrome.

At the time of the aforementioned visit, the patient had stopped wearing her soft contact lenses based on instructions from her primary care optometrist, but was using artificial tears 10 times a day. “I suggested a mild steroid and added oral doxycycline, as she demonstrated mild facial rosacea and chronic lid margin changes characteristic of posterior blepharitis,” says Dr. Den Beste. “I thought her complaints were more inflammatory in nature rather than arising from a lack of tears.”

When she returned a week later with a 3mm oval abrasion above fixation in the right eye, Dr. Den Beste stopped the steroids and placed a bandage soft lens on the eye. After a two-week period of follow-up and several different bandage lenses, not much had changed. Instead, Dr. Den Beste tried a Prokera (Bio-Tissue) amniotic graft. While the abrasion shrunk significantly over the next five days, the surrounding epithelium began to show intense staining.

At this point, Dr. Den Beste went with a bland ointment and autologous drops formulated from a 50% concentration. After using the combination every two hours for a period of three weeks in both eyes, the patient felt much better, initially. “Her punctate changes were much improved and she was much more comfortable,” says Dr. Den Beste.

A week later, however, the patient came back with a large abrasion on the inferior cornea of her right eye. “The surrounding anterior stroma demonstrated white blood cell migration, so I prescribed a topical fluoroquinolone,” says Dr. Den Beste. Again the patient’s infiltrate resolved and she went home with a bandage lens.

One more week later, though, she came back with yet another large epithelial abrasion. Also, her previous inferior lesion showed stromal thinning.

“After four months of steroids, bland ointment, autologous drops, amniotic membranes, moisture chamber goggles and bandage contacts, I sent her to her rheumatologist and suggested she be given a biologic response modifier or a traditional disease-modifying antirheumatic drug (DMARD),” says Dr. Den Beste.

Sjögren’s patients often present with inflammatory dry eye, shown here. Photo: Alan G. Kabat, OD

The Fix

Per Dr. Den Beste’s request, the rheumatologist gave the patient 200mg of Plaquenil (hydroxychloroquine, Sanofi-Aventis). Within two weeks, her condition changed dramatically; the abrasions resolved and her comfort returned. “Plaquenil is an older DMARD but it is still used, especially for patients with lupus,” says Dr. Den Beste.

“It is not clear how the drug works, but it is thought to block pro-inflammatory pathways.” According to Dr. Den Beste, large sterile ulcers that occur in the periphery can lead to extreme corneal thinning and perforations, typically in patients already on medications for serious autoimmune conditions, such as Sjögren’s.

“This case was unusual, however, because the patient was under the care of a rheumatologist and was thought to be doing fine systemically,” says Dr. Den Beste. “It wasn’t until she broke down from an ophthalmic standpoint that we recognized she needed oral medication for her rheumatologic disease.”

According to Dr. Den Beste, corneal involvement in patients with severe autoimmune diseases such as rheumatoid arthritis can typically be managed with topical medications and, occasionally, oral steroids. However, sometimes they require ongoing treatment with a DMARD or a biologic response modifier such as Humira (adalimumab, AbbVie).

“As ODs, we often call on rheumatologists when dealing with severe uveitis or scleritis,” says Dr. Den Beste. “The lesson here is to consider that same referral when dealing with recalcitrant dry eye and corneal inflammation.”

https://www.reviewofoptometry.com/ar...-eye-gone-awry

[MGD1701]

Just found my note that, one of opinion leaders, Prof. Marguerite McDonald, mentioned (pretty sure in 2018?) if osmolarity 296 or higher she prescribes Restasis. My level is about the same (after LipiFlow) yet none of 15 doctors prescribed me - almost all said no inflammation.

[deep_dry_eye]

Just found my note that, one of opinion leaders, Prof. Marguerite McDonald, mentioned (pretty sure in 2018?) if osmolarity 296 or higher she prescribes Restasis. My level is about the same yet no doctors prescribed me.

You gotta ask for it. Many of these drs were educated without this knowledge. Dont assume drs know everything. dont be afraid to get multiple opinions from different dry eye expert drs.

I am personally on Xiidra and restasis BID, I find both drugs to help.

[MGD1701]

My eyes have been pretty good - only need 1-2 drops a day.
Not sure if restasis will help me - but wont hurt to ask.