MGD from Accutane

[KeithM]

Hello. I first want to thank Rebecca for this site. I am long term reader of the forum posts, and first time contributor. Over the years, the feedback from the contributors has been a great source of comfort. Considering my increasingly worse dry eye situation in the past year, I wanted to share my story with the user group in an effort to find some hope.

I was afflicted with dry eyes back in 1995 after taking Accutane. It has caused severe meibomian gland dysfunction (MGD). Over the years, there have been extreme periods of eye pain, headaches, and lately, anxiety coming from triggers that have aggravated the situation. Many years ago, I had bad reaction to topical aesthetic eye drops (Opsthetic) and flourescin eye drops given to me for a typical glaucoma test. Also, usually, after taking an antibiotic, my dry eye discomfort intensified for up to 9 months afterwards. I have had other situations where my dry eye pain became worse after a dental exam irritated my mercury amalgam fillings, and even had a bad reaction to flax seed or fish oil supplements (not sure which).

Historically, I classify my MGD dry eye situation as either "manageable" or not manageable. I understood over the years that when it's relatively manageable, it's just always on the cusp of being pushed over to the other unfortunate side. My best protocol has always been to avoid taking any medications that would aggravate my pre-existing MGD. When I was in a manageable time period, my main dry eye MGD regimen over the years has included daily lid scrubs, warm compresses as needed, OTC preservative free eye drops (a lighter bend of Tears Naturale now called Genteal), and Restasis since 2010 that I have found to be beneficial. However, when my situation becomes not manageable, it seems that nothing I do helps. In these times, I would increase my compress routine and begin to take thicker drops (including Refresh Optive Advanced and Retain) and Refresh PM nighttime ointment.

Since September 2017, my MGD situation has become much worse, and I am not getting any production at all from my meibomian glands, even after warm compresses. Historically, my symptoms included dry eye pain and irritation severe headaches throughout the day. However, the symptoms this time around have morphed into a feeling of anxiety and weakness and general uneasiness, that has overshadowed the headaches. In all the years suffering with dry eyes, I never felt this way.

I cannot identify any obvious trigger for my current increased dry eye pain. I can only speculate about sunblock paste that I used on my neck and face about a month earlier that could have been absorbed into skin. I have not read any evidence to support issues with sunblock on MGD dry eyes, but it does seem to have some toxic ingredients that could cause havoc with certain glands such as the thyroid. BTW, I was diagnosed with an overactive thyroid from Graves disease a few years back and was successfully treated with methimazole for over 2 years to bring my thyroid back in line. Fortunately, at the time, I did not have any additional side effects related to my eyes, and I was able to wean off the medication a couple years ago.

So in the past several months, I have been trying to explore other avenues to see if there could be something else in my body interfering with my Meibomian glands. I have seen my general doctor, an Allergist, Rheumatologist, and Endocrinologist and have received a ton of blood work. Nothing significant to report other than a positive ANA antinuclear antibodies test, which I was told is likely the result of my past Graves disease diagnosis. I even explored an impact of the mercury amalgams in my mouth, for which I have 8 currently in my mouth. The blood work for mercury toxicity was in the normal range. However, the more reliable (from what I am told) hair follicles test for heavy metals indicated that I was at a toxic level for mercury (0.113) and aluminum, which is basically any measurable trace in the body since they are toxic metals. I'm not sure if and how I should proceed with this information. Will it benefit my eyes if I get all the mercury fillings removed and consider a chelation program? Also, my latest blood work of thyroid TSH levels indicate that it is still within the normal range, but are considered to be low/normal on the borderline, heading toward a hyper-thyroid. As a result, my endo doc prescribed a low dose of methimazole hoping that would help with my dry eye symptoms. Its been 3 weeks and no benefit yet.

In the past months, I have been working with my dry eye specialist doctor in New York to try to find relief. I have tried a 6 week regimen of salmon oil. I even tried Xiidra for about 6 weeks, but neither have provided any additional relief. I'm at a point of desperation now and I would like to try any other modality for my MGD that could provide some relief. My dry eye specialist doctor wants to hold off on steroid drops, especially considering my past sensitivity to BAK preservative in many of these products. He is considering steroids as the last resort, and will prescribe dexamethasone when that time comes. I wanted to explore any other treatment that would provide relief for my MGD situation. As of now, I have never tried Lipiflow or IPL therapy. I am also interested in Meibomian gland probing.

Sorry to be longwinded in my dry eye biography, but if anyone can provide any feedback or offer any advice on my situation based on their experiences, I would greatly appreciate it.

Thank You for listening,
KeithM

[Erc138]

Hi Keith- I'm sorry to hear things have gotten worse. As to the sunscreen, "EWG reveals that the chemicals commonly used in sunscreen are endocrine disruptors, estrogenic and may interfere with thyroid and other hormone processes in the body." So I would recommend to only use a mineral sunscreen which are considered to be safer. Maybe your dry eye is also triggered by hormone fluctuations.

I can tell you what I am personally trying to improve my dry eyes-
1. Healthy eating, no sugar, no alcohol
2. Increase my muscle mass and decrease my fat (to level hormones)
3. I put metrogel 1% on my eye lids and around my eyes. This is to reduce inflammation. This has helped. But i's hard to get a doc to give you this.
4. I clean the inside if my eye lids daily but very gently scrubs and scrubbing tend to inflame things more
5. I'm on Xiidra (not sure if I'll continue)
6. I am contemplating paying for sclera lenses (I just don't want my eyes to burn anymore- is that too much to ask)

Also my dry eye was cause by medication (birth control)

I think you'll feel better soon but the highs and lows of dry eye can be excruciating. Hang in there.

[KeithM]

Erc138,

Thank You so much for your feedback. I appreciate it. I don't drink alcohol for the dry eye reason but I do eat my fair share of sugar, so that might be worth a try. That was an interesting comment about hormones. I was previously diagnosed with thyroid Graves disease but never had dry eye side effects, but it's somewhat hard to believe that there is no connection. Not to mention the possible disruption of the endocrine system from the sunblock. It's so frustrating that as dry eye patients, we have to be so careful with every action to our bodies (whether it's food, medication or topical treatments) that others can tolerate without an issue. Are there any specific tests for hormone levels that your can recommend?

I was also on Xiidra for 6 weeks and it did not seem to make a difference, so I am also ready to stop. I'm glad you are also continuing to explore other options. Sclera lens might be a good option for you, especially if you are mainly aqueous deficient. I will have to look up Metrogel and review with my eye doctor.

Thanks again.

[Hokucat]

Hi Keith. Sorry your condition has worsened. Have you had your meibomian glands expressed? This can help clear glands clogged with thick oil, get an idea of the percentage of glands are still producing oil and the quality and quantity, and the percentage not producing oil at all (which could mean they are blocked with very thick/dry oil, have scar tissue, or atrophied). Expression is often done wth the IPL or probing procedure, but can also be done alone.

Next I would try IPL. Especially if some glands are still producing oil, even if thick. Seems less people have success with Lipiflow, even though it's more available. But the Lipiview evaluation can provide good info on your blink rate, tear film, some have been told their glands are capped with scar tissue, etc. If IPL does not work, and/or all your glands are capped or not producing oil, then perhaps try probing, the more invasive procedure.

I agree with erc138 healthy eating may help. Especially if you've been diagnosed with Grave's disease, a type of autoimmune disorder. I likely have Sjogren's, and changing my diet, plus eliminating sugars, dairy, and gluten was key to managing the dryness. The diet change with the most impact was drinking green tea with fresh lemon juice 2x daily. After less than a week drinking this, my eyes starting feeling less dry. Somehow I think the anti-inflammatory, antibacterial, and antibiotic properties helped eliminate bad bacteria and inflammation in my eyes and gut (where most autoimmune diseases start), and helped my body function like it's supposed to. I have since read studies from Purdue about lemon/citrus/green tea helping the overall immune system and preventing diseases like cancer, etc. Perhaps the lemon/tea and other diet changes would help you too, given you have autoimmune disease, and possibly even the residual effects of accutane in your system.

https://www.purdue.edu/uns/x/2007b/0...rruzziTea.html

You mentioned sclerals. Have you already gone for a consult to see if you can tolerate them and if it helps your eyes feel better? After doing probing and diet changes to get better, sclerals help me manage the remaining dryness I have due to atrophied glands. I was advised to do all kinds of things like take chemo, remove my mercury fillings like you, etc., but am glad I didn't.

Hope you find some relief soon, Keith.

[MGD1701]

Hi Keith

Gland images/secretion status, inflammation:
I would say these are important to decide how aggressively should be treated (probing, IPL, LipiFlow etc) to stop pregression.

heavy metals are bad for liver which will also affect eyes, I assume.

thyroid TSH: good to check T3 & T4 too.

Did you also check Vit. D, Zinc? these could affect dry eye too. Since you use sunblock, maybe Vit. D is insufficient??

[Erc138]

Hi Keith- Unfortunately I am in the "normal" range for hormones BUT normal for who? Normal for the average person, obviously I'm not average. I just had a traditional hormone test through my regular primary care BUT I do know there are more precise hormone test out there and I do believe naturopaths perform some different ones. My doctor made me say I was fatigued to get the test.cause insurance companies could care less about dry eye or its trigger.

Here is the link to the metrogel study- https://www.ncbi.nlm.nih.gov/pubmed/8942885 it's usually prescribed through a dermatologist but I "borrowed" my moms.

Anything that can reduce inflammation is going to be a good thing. All antibiotics have a slight anti-inflammatory side effect and I like the idea of topically applying instead of taking oral antibiotics, after the whole birth control debacle I'm pretty hesitant about medications and the side effects. Just remember our bodies have the ability to heal themselves, we just need to give it the tools to do that...just hard to find those tools. I agree with Hokucat, expression of the glands is very helpful, I am able to do this at home myself (not everyone can). I feel expression of the glands is like physical therapy for the eyes.

In the immortal words of Tupac "even though you're fed up you gotta keep your head up".... It's my mantra when it comes to dry eye.

[KeithM]

Hi Hokucat:
Thank you for your concern. I wanted to thank you for your feedback. My spoke to my doctor, and he said he will do gland expression in the office when I see him next in a couple of weeks. He seems to think that it would be equally as effective as Lipiflow. If it does work, I will ask if I can do at home myself. I certainly want to consider trying LipiFlow, or IPL if the expression is not enough. I would also definitely go the probing option as well as long as it is considered safe. Have you had probing done yourself? If so, is it safe? Thank You for the tea recipe I will give this a try.

I am curious about your comments on being glad you did not remove your mercury fillings. Is there a particular reason why you feel that way? My fillings are always in the back of my mind as an agitator to my dry eye condition, so I am also struggling with the decision to move forward and have them removed, or just let them be. Also, is a chelation program necessary if they are removed? My hair analysis test indicates a so called "toxic" level, but that might be true for anyone who has fillings in their mouth.

Hokucat/ Erc138:
I think I will also try the sugar/lactose/gluten free diet for 6 weeks at some point this summer to see if it helps. Do either of you have a specific diet plan you can share with me?

Hi Erc138: I never thought I would be quoting Tupac, but I must admit the line is very appropriate for our situation. I will try to keep my head up..thank you!

Hi MGD1701: Thank you for you feedback. I am grateful. It's funny that you mentioned vitamin D deficiency, because me last bloodwork this month did show vitamin D to be 24.8 which is a little under the normal range of <30. I mentioned to my dry eye specialist and he did mention that this could impact dry eyes but maybe not specifically MGD. I will speak to my endo doc this week to get a recommendation on vitamin D supplement dosage, or maybe she will jus tell me to spend more time in the sun. I recall also having low vitamin D a couple years ago.

Here's for healthy days in the future for all of us.

Keith

[Hokucat]

Hi Keith. You're welcome. Just to let you know, expression can be a very uncomfortable procedure, The doctor is literally squeezing each gland like bursting a pimple, but the eye area is way more sensitive than the rest of the face. I'm not sure if you would be able to express your glands yourself, but have read in this forum some people have.

Yes, I've had probing five times over two and a half years. This is also a very uncomfortable, plus invasive, procedure. I had to have probing because I had many glands with scar tissue, nothing else would be able to clear that. Each time I had the procedure, my eyes felt a little better, but only for a short time because the glands would quickly get blocked again. This is despite after each probing, making different changes to my diet. After my last probe procedure, I started drinking the lemon/tea, and for me that's what finally made a difference, no more probing needed. Of course, I still have some degree of dry eyes due to several atrophied glands, so wearing the sclerals helps.

The reason I said I'm glad I didn't remove my mercury fillings like my naturopath recommended, is because fortunately I found the lemon/tea is what I needed. Removing the fillings would have been unnecessary. I'm not familiar with chelation.

My naturopath did give me amino acid shots every 6 weeks for a period, which made my eyes feel terrific for a few days after each shot. However, the shots were prohibitively expensive for just a few days relief, and as my glands developed scar tissue, the shots didn't work as well anymore. But knowing that the right amino acids could help my glands function better was KEY in my logic of trying different diet changes after each probing. It sounds like you might be seeing a naturopath since you mention removing fillings, chelation, metal toxicity, etc., so perhaps you can ask him/her about amino acid shots or look into it.

[Hokucat]

As far as diet recommendations, different things work for different people, but below is basically what I eat every day now. It evolved based on keeping a daily log of what I ate every day and noting how my eyes felt that day and the following day. I usually only made one diet change at a time, to make sure I could isolate what foods made my eyes feel better or worse.

BREAKFAST - I've found I need to start off the day with my main meal:
-Drink one cup water as soon as wake up.
-Spinach or dark leafy greens salad
-One cup fresh berries (strawberries, blueberries, blackberries)
-Small portion of protein (usually chicken or salmon, but find a good cut of steak or filet mignon for some reason always makes my eyes feel even better)
-Green tea with juice from 1/6 of medium to large meyer lemon and slice of crushed ginger

DURING DAY:
-One cup fresh vegetable juice (or thawed from frozen - I juice once a week and freeze it). A rainbow of colors: Kale, chard, parsley, bok choy, cucumbers, beets, carrots, butternut squash, apple. When started adding parsley, seemed to notice more improvement in eye moisture.
-Drink lots of water.
-Green tea with lemon and ginger
-Lunch is very light. Since I eat small portions here, if I'm going to eat something that's not as good for me like a sandwich, taco, pasta, etc., this is when I do it

DINNER:
-Small portion of protein
-Vegetables (usually broccoli, asparagus, etc., something dark green)
-Drink a cup of water.

Drink chamomile tea before bedtime.

I limit gluten, dairy, and sugars. These three things always made my eyes feel worse. However, if I follow my diet 80-90%, I am able to have some of these things now.

Hope something here might help, Keith. It can take awhile to find the diet that helps you.