New to forum - could use some guidance

[twentydry]

Hello everyone!

I am new to this forum, hoping to find some help. I've read posts here and there that have been extremely knowledgeable so figured I would post and see if I could get any more help.

I'm 25 years old and started feeling symptoms after taking Accutane. My doctor who prescribed Accutane told me there's nothing to worry about as he'd be monitoring my body for any risks. I brought up my issues about my dry eyes, to which he told me to not worry since they should go away after a couple of months after taking my last pill. Fast forward several years later, definitely not the case.

Now, here are a few things I've tried and really haven't gotten any significant improvement:
Lipiflow
IPL (4 treatements)
Alrex
Xiida
Warm Compresses
Omega 3s
Castor Oil
Manual Expression
Doxycyline
Eye drops, gel, ointments
I'm sure there's more, but that's all I can think of at the moment haha

Do you guys have any suggestions on what I should be considering as next steps? My doctor mentioned blood serum drops could be next, but starting to get nervous that I'm spending all of this money for no improvement. I can't tell if I'm just losing trust in my doctor or if it's just losing hope for the entire situation.

I also struggle with the fact that insurance doesn't really help much with this condition. Do you guys have any suggestions on that? I've considered scleral lenses but seems like another super expensive treatment that I can't afford, unless insurance would be willing to help. Any thoughts, ideas, suggestions would be greatly appreciated thanks yall!

[hopeful_hiker]

Hi there! Sorry to hear about your troubles. We put trust into medical professionals but they may be oblivious to side effects that are not in their field.

What’s your gland status? What is your biggest problem/symptom? Did your lipiview show gland loss/atrophy or low lipid layer thickness?

Some palliative things to consider: scleral lenses, moisture chamber glasses and humidifiers, moving to a humid climate, eye drops designed for MDG (e.g. Retaine MDG). These do not fix the glands but they can increase your life quality. Sclerals seem to be pretty good for MDG or LASIK patients with functioning lacrimal glands (i.e. no aqueous deficiency or mild aqueous).

As for restoring the glands. Some doctors claim success with PRP injections. Some people do monthly IPLs.

Finally, meibomian glands are also regulated by hormones. It still boggles my mind. Why would that be helpful?

Anyways, low androgens or birth control pills can be an issue. However, it seems like you already know the cause so this is probably irrelevant.

[twentydry]

Hey hopeful_hiker thank you for replying! I definitely regret listening and taking that drug at all now but oh well.

So gland wise, my left eye isn't looking too great. I think I have maybe ~25% glands left as the rest have atrophied. I don't remember the percentage on my right eye but I remember that it was better than my left eye. When my doctor manually expresses my glands, she always says that my right eye excretes a lot more oil than my left eye. The glands just unfortunately clog. My biggest issue now is how dry they feel. It almost feels like sandpaper because my tears evaporate so quickly. I feel l blink every 2-3 seconds to compensate for the evaporation. My eyes are also always red. I really can't remember the last time they were white.

I've been really considering scleral lenses as my next step but am really struggling with the cost. Do you know of a way to convince insurance to help with this?

PRP injections are something I've never heard of actually. Will definitely try to look into this more. I have been doing pretty frequent IPLs though but have had no luck.

[Hokucat]

PROSE scleral lens fitters will handle all the interaction and paperwork with the insurance company. Assuming after the consult with them that sclerals are deemed a medical necessity to help manage your dry eyes, they will provide the necessary paperwork to the insurance company to approve coverage, assuming sclerals are covered by your insurance in the first place. PROSE fitters are one of the top sclerals fitters, especially for dry eyes, and one of the only major fitters I’m aware of that work directly with the insurance companies.

My PROSE sclerals and fitting process cost thousands of dollars, but I ended up only paying a few hundred dollars out-of-pocket after insurance coverage. You’ll need to go for a consult first, to see if you are able to tolerate the lenses, as not everyone can. I believe the PROSE folks can check before you even go for a consult whether your insurance covers sclerals. Below is a link to their website which includes a good description of sclerals, insurance, their clinic locations, and other info:

http://www.bostonsight.org/PROSE/PRO...-Used-in-PROSE

[MGD1701]

Hi Twentydry

First you need an accurate diagnose.
Treatment in a right order and combination makes a difference. Good to find out if you have
scar tissue, normally this should be done (by probing) prior to LipiFlow otherwise LipiFlow wont work.
debridement/BlephEx helps remove (years of) bioflim and normally should be done prior to LipiFlow too.

(one expert in USA does 1: BlephEx, 2: LipiFlow, then manual expression---same day as it can last longer, according to the doctor, details see my old post) I wish I knew this when I did LipiFlow as I only did LipiFlow which helped about 65%)

demodex is often underdiagnosed which is common for MGD suffers
blinking, lid sealed issues?

more perhaps yo could read my old post
http://forum.dryeyezone.com/forum/ar...a-tea-tree-oil

particularly
master compress - constant wet heat, 45C are the keys. most experts in USA recommend
omega 3 combined with GLA works more effective than alone.
lid cleanser with pure HOCL, like Avenova - control bacterial overgrow

[twentydry]

Hokucat I can't even manually express (hahaha....) how grateful I am for this information! I honestly never would've known and I just assumed insurance wouldn't cover the lenses so I had a hard time really considering it. I will definitely look more into this and hope to have a similar experience. Out of curiosity, are the lenses a one time charge? Or you need to periodically buy new lenses and have to pay for them again, etc.

MGD1701 thank you so much for this information as well.I figured my Lipiflow wasn't done properly as I really saw minimal if any benefit. Which is unfortunate with the cost of the procedure. When you say probing prior to the Lipiflow, are you talking about like Dr. Steven ****** probing? Or just manual expression? I ask because 1) I can't seem to find a doctor in Dallas Tx that does probing and 2) it seems the cost would be extremely high as both the probing and Lipiflow procedures are pretty pricey.

Do you recommend any particular omega 3 w/ GLA? Like is there one pill that I can take with both? Or do I need to purchase them separately?

[Hokucat]

Sure, glad to help. No, the lenses are not a one-time charge, you typically have to pay for the lenses every time you get new ones. However, the initial cost of getting the lenses is much higher because of the fitting fees...it can take several tries to get the right fit.

My sclerals have my prescription, so I get them replaced as my prescription changes. If you get the lenses just to treat dry eyes with no prescription, likely it can last longer, however you may need to have the plasma coating redone (it’s supposed to make the lens more comfortable to wear). I was also told sometimes new lenses are needed because over time, the lenses can warp, the shape of one’s eyeball might change, etc.

I hope it all works out with your insurance and you being able to tolerate the lenses.

[MGD1701]

Most experts in USA recommend
HydroEye (GLA, EPA and DHA) & some recommend PRN (no GLA).

since you have tried many stuff, what imporant is find a real expert for an
accurate diagnose with objective data/testings because many signs/symptoms sound dry eye but may not be the case.

curious to know exactly what tests doctors have done since you have tried so many things.

[Fifi87]

Hi Twentydry

If you think, how would be "probing" good? Makes no sense to me. If Meibom-glands dont work, then they dont produce the oil and that's it.
Probing iwould be only efficient when you have inflammation in the ducts and they are closed, but I'm not so sure about that.
All I want to say forget probing it wont make a difference in exchange you would have bigger eyelids as they would be inflamed.

I'll write another post about what I'd recommend

[Fifi87]

Hi Twentydry

Accutane, hmm, brings up bad memories.
You should try out the following:

- Evening Primrose oil(high quality)
- a, 2ml/day oral and b, 3 times a week a little into the eyes
- sometimes organic, cold-pressed, hexane-free castor oil (high quality) into the eyes, but little amount

EPO taken orally can induce hormonal changes, but it'd take a year at least

[Fifi87]

Hi Twentydry

One last comment.
If you used Accutane, then your condition can be getting worse too.
But you should really consider what kind of method you use.
Anything that could lead to inflammation should not be tried out.

[Guest]

I'm sorry this happened to you.But your dry eyes won't go away.Accutane permanently shrinks your oil glands.I took it 35 years ago and still have dry eyes,Just try everything you can.That's what I have been doing.After all these years,still trial and error.

[Fifi87]

Hello!

I have conjunctivitis(pink-eye), the right eye is affected.
Yesterday I didnt use CAstor oil, but before I used it for 3 days and today it's getting better.

What I take are the followings:
Hyal-Joint hyaluronic acid (40mg/day), the producer is Bioiberica
Vitamin-E 400mg/day
Organic, cold-pressed high quality castor oil before bed.
Daytime: Vizol eyedrop containing 0,21% sodium-hialuronat
Fortunately I'm not allergic to anything and I only use expensive, high quality, glass bottle oils.

Accutane story:
I have dry eyes because when I was 17-18 years old I used Roaccutan (Accutane) 2X20mg/day for 6 month, then after 2 month break I began to use it again but for a short period, because nose bleeds were becoming more severe. 13 years later the symptoms became even worse, now I have to cure myself, when I dont do anything I will get inflammation again.


Pink-eye story(2018.07.03-2019.04.15)
For the pink eye earlier I tried Alleopti(sodium/natrium-chromoglikat), it helped a lot until a certain point.
The cause was an eye infection which I acquired from the air that is around us. First I had to use Tobradex for a month, cause it was so painful.
With those stuff I could cure my left eye and the right eye become much more better. And now is the time when those stuff have actually no effect and I have to do something when I want to recover fully.

Today pink eye and the thick conjunctiva layer is disappearing.
I hope this is helpful, if anyone has the same Meibomian Gland Dysfunction (aka. dry eye) and in addition gets pink-eyes(conjunctivitis).
To cure pink-eye or any infection when you have dry eye is a horror story. So much pain I have never felt in my life.
My left eye is okay and dryness is weaker because I use castor oil, but I also have my pause/break, I mean I dont use it every day.

I hope everybody gets better.

[Guest]

..........

[Fifi87]

Hi

Update:
What I take are the followings:
Vitamin-E 400mg/day
Vitamin C 100mg/day
Krill oil 1000mg/day (1 tablet, it contains less oil it's in a gel)
Organic, cold-pressed high quality castor oil before bed.
And now I dont take Vizol eyedrop (containing 0,21% sodium-hialuronat)
I think Vizol eyedrop caused me floaters.

And my eyes are not so dry and my conjunctuivis(inflammation of the conjunctive) is getting better.
Thies is all that happened since I last wrote here. I dont have any other news.
I hope everyone will get better with their dry eye and other problems.