Accutane induced MGD - I've completely given up

[32nitrox]

Hi Sylfaen,

You mentioned a manual procedure that Dr Tseng performed, was it Meibomian Gland Probing?

[Sylfaen]

Hi Sylfaen,

You mentioned a manual procedure that Dr Tseng performed, was it Meibomian Gland Probing?

I don't recall him ever giving it a specific name, but I would assume that's descriptive enough.

[NotADryEye]

Sylfaen,

First, don’t’ give up hope.

I was like you not that long ago, in extreme pain, and without hope. Somehow I found Dr. ****** in Tampa. I live in Florida also and am blessed that he is only a long drive away. If the driving that distance is difficult, maybe a friend or family member can drive you to Tampa.

I recommend Dr. ****** because he helped me tremendously when no one else could, including the specialists at Bascom Palmer and Dr. Tseng. Dr. Tseng helped to some extent but the eye pain was extreme and Dr. ******’s approach took into account the fact that I needed relief, not just treatment for various comorbidities.

The severe pain you describe reminds me of when I had conjunctivochalasis. It was absolutely devastatingly painful, beyond what a human being should have to endure. Surgery was the only solution for me, and it was extremely beneficial.

Below are some thoughts/questions about the procedures you’ve had:
1. Mites – do you have demodex mites? Are you treating them with Cliradex wipes?
2. Restasis – are you able to tolerate it well or is it causing some of the pain? When I was on Restasis I recall eyeball pain so severe that I could feel the entire eye ball in my head, its boundaries, like a golf ball. The pain was so severe that I reported it to the FDA.
3. With the gland opening procedure – did Dr. Tseng insert a tiny probe into each of your meibomian glands individually or did he press on the outside and inside of your lid simultaneously with a warm instrument or did he do something else?
4. Lipiflow – if your meibomian glands are plugged with fibrous tissue or other material the meibum will not flow out after a Lipiflow treatment. It will stay inside the gland and may even cause worse problems. It would probably be better if Lipiflow treatments were preceded by meibomian gland probing. The two procedures would then complement each other. Probing alone can help tremendously. Dr. ****** is the probing guru, which would be another reason to see him if you can.

But please, don't give up hope. Stay strong.

[Sylfaen]

Sylfaen,

First, don’t’ give up hope.

I was like you not that long ago, in extreme pain, and without hope. Somehow I found Dr. ****** in Tampa. I live in Florida also and am blessed that he is only a long drive away. If the driving that distance is difficult, maybe a friend or family member can drive you to Tampa.

I recommend Dr. ****** because he helped me tremendously when no one else could, including the specialists at Bascom Palmer and Dr. Tseng. Dr. Tseng helped to some extent but the eye pain was extreme and Dr. ******’s approach took into account the fact that I needed relief, not just treatment for various comorbidities.

The severe pain you describe reminds me of when I had conjunctivochalasis. It was absolutely devastatingly painful, beyond what a human being should have to endure. Surgery was the only solution for me, and it was extremely beneficial.

Below are some thoughts/questions about the procedures you’ve had:
1. Mites – do you have demodex mites? Are you treating them with Cliradex wipes?
2. Restasis – are you able to tolerate it well or is it causing some of the pain? When I was on Restasis I recall eyeball pain so severe that I could feel the entire eye ball in my head, its boundaries, like a golf ball. The pain was so severe that I reported it to the FDA.
3. With the gland opening procedure – did Dr. Tseng insert a tiny probe into each of your meibomian glands individually or did he press on the outside and inside of your lid simultaneously with a warm instrument or did he do something else?
4. Lipiflow – if your meibomian glands are plugged with fibrous tissue or other material the meibum will not flow out after a Lipiflow treatment. It will stay inside the gland and may even cause worse problems. It would probably be better if Lipiflow treatments were preceded by meibomian gland probing. The two procedures would then complement each other. Probing alone can help tremendously. Dr. ****** is the probing guru, which would be another reason to see him if you can.

But please, don't give up hope. Stay strong.

1. I do not have mites.
2. Restasis I can tolerate. I took it for 6 months and it didn't do anything for me.
3. Tseng did an individual probing.
4. I'm 90% sure Lipiflow did indeed make me worse.

A new development is that even when I close my eyes now, I am in pain. It's pretty much a challenge now to just fight back the hysteria of never having a break from pain.

[NotADryEye]

A new development is that even when I close my eyes now, I am in pain. It's pretty much a challenge now to just fight back the hysteria of never having a break from pain.

I am not a doctor but the way you describe the pain sounds exactly how it was for me with conjunctivochalasis. I took Alprazolam, .25mg, just to stay calm. Of course alprazolam dries the eyes, so it's not good, but I did not know that back then. Thankfully I found Dr. ******, he diagnosed the conjunctivochalsis (this is not something you can see in a mirror, nor is it something that will go away or that drops can take care of) and I am way past the horrible pain.

Can you get to Tampa? (My vote)
If not, can you ask Dr. Tseng about conjunctivochalasis. His company makes the amniotic membrane that is used in the trnsplantation procedure.

[Sylfaen]

I am not a doctor but the way you describe the pain sounds exactly how it was for me with conjunctivochalasis. I took Alprazolam, .25mg, just to stay calm. Of course alprazolam dries the eyes, so it's not good, but I did not know that back then. Thankfully I found Dr. ******, he diagnosed the conjunctivochalsis (this is not something you can see in a mirror, nor is it something that will go away or that drops can take care of) and I am way past the horrible pain.

Can you get to Tampa? (My vote)
If not, can you ask Dr. Tseng about conjunctivochalasis. His company makes the amniotic membrane that is used in the trnsplantation procedure.

Yes, the Prokera. That is likely to be my next treatment. I'm just waiting for Dr. Tseng to return my calls. I'll give Dr. ******g a call perhaps, if he'll give me the time, and ask him about his opinion. Tampa is doable since I live in Florida, but it's a 4 hour drive and I have to find someone willing to take me up there.

[NotADryEye]

Yes, the Prokera. That is likely to be my next treatment. I'm just waiting for Dr. Tseng to return my calls. I'll give Dr. ******g a call perhaps, if he'll give me the time, and ask him about his opinion. Tampa is doable since I live in Florida, but it's a 4 hour drive and I have to find someone willing to take me up there.

Regarding tissue used in conjunctivochalasis, I was referring to AmnioGraft. It's not a lens that's removed. It's tissue used in transplantation. The damaged conjunctiva is removed and the amniotic membrane is grafted during surgery. Dr. Tseng's company also makes Prokera.

Dr. ******: 813-875-0000
If you have questions, Dr. ****** will answer them. I was both amazed and ever so greatful when he called me the first time and answered my questions.

[Jenn1]

I'm not sure about the dosage. I am in the United states. Cold, moist weather has been the best for me, for sure. However, I can't consider moving anywhere because I literally cannot support myself in any way shape or form. I can't leave my outside patio, much less work or travel to the store myself. I'm not sure about the thyroid either. I'm having blood tests done in 2 days, so we'll see.

Just to add in case it may help you or others, my eye issues have been going on for about two years now, I was having my thyroid levels monitored and kept being told my levels were 'normal' despite the fact that some of the test result copies I asked for showed otherwise at times. I went to the doctors who mentioned hypothyroidism, although I must state that Accutane has caused me mgd/blepharitis or whatever name the eye docs want to give it, the thyroid element may have contributed to my severe eye burning and dryness and not just the Accutane alone (this drug might have contributed to thyroid problems though), so make sure the docs aren't just saying your thyroid levels are fine, if you can make them test your levels every few months get copies of results and see if you can see a pattern or if the levels are going up and down and also showing normal at times, join a thyroid forum if you need to ask others what the results mean and then after about a year or so or earlier you may be able to rule the thyroid issues out completely, or you may find the reason why your eyes are so severe and painful.

My eyes have calmed down a lot in regards to the burning and dryness and having mastered warm compresses and unblocking the glands, but also I believe that whatever autoimmune system imbalance there was, it seems to have settled a lot even if not completely in affecting my eyes. It may also be helpful to check both symptoms of hypothyroid and hyperthyroidism and even euthyroid or 'normal' thyroid levels and speak to people about their thyroid issues. However, other things can also cause eye irritation which im sure your doctors will be checking such as sjorgens, but its important you do your own research too and get copies of results.

Keep using your eye drops and cold compresses if you cant tolerate warm compresses and I completely understand about not being able to go out or work, but I hope youre getting some help through benefits since youre justified in claiming them. Things can get better as many have already said, but do research yourself or get family to help you. I couldn't sleep for an hour even when my eye issues first started, but they are bareable now. I know with thyroid eye disease, it can last years for some and shorter for others and most doctors dismiss this eye disease unless its the rare severe type which requires medication and even surgery, but again this may not apply to you and severe thyroid eye disease is extremely rare, mild and moderate are more common so do look into this eye disease too and any other illnesses that affect the eyes and check if they match your symptoms and talk to your doctor about them to dismiss each of them if needed. Don’t be afraid to challenge your doctor or see another for a second opinion.

Im probably repeating myself, but do keep looking for reasons you eyes are the way they are, yes Accutane has caused the mgd but maybe its induced some autoimmune disease also making the eyes much worse, which I suspect Accutane does despite some medical professional cover ups protecting drugs companies and their jobs and bonuses! Accutane does affect the immune system so its not far fetched to look into such diseases to rule them out.

[sleek822]

Sylfaen,

I feel your pain...I too am 22. Long story short, I have done most of what you have done, plus a couple more. To keep this brief and to the point, here is what we have in common based on what you have wrote:

1) We're young so this isn't age related
2) we have no visible inflammation

My advice to you, based on what has helped me and what I have read:
1) Stop doing the warm compresses, maybe change to cold
2) Take a multivitamin (This has helped me more than many steroids)
3)Take a probiotic (try culturelle...probiotics eat away at harmful bacteria causing inflammation)
4) Take NAC supplement (I am going to try this very soon. Have done a lot of research)
5) Take lactoferrin supplement (Just ordered these. These have been proven to restore tear making ability and cut away at inflammation

Also as a word of encouragement, there are two drugs coming out. One (Lifitegrast) will be released at the end of the year and the other (forgot the name) will be released in beginning of 2014.

As a side note, I know you say you dont have inflammation, but maybe it is too far down in the glands for anyone, including your doctors, to realize.

Good Luck,
Nate

Hi BigNate
Did you have any success with the lactoferrin? Ive been reading about this lately. Ive been trying Chinese acupuncture for the last month. Starting to get really expensive but its hard to know when to stop, as I havent noticed any improvement. I have Accutane induced MGD/dry eye like Sylfaen. But what really troubles me is the red irritated eyes. I dont really have pain which I am grateful for.
I found the NAC helped the tears secrete better, and the eyes to appear less inflamed.
Didnt notice any improve with probiotics, but then again I may not have used them long enough.
It took me years to find a way to unclog the glands. What I do is heat a jug and put my face over it with a towel draped over for 5 minutes. It gets the tears flowing, but makes the eyes more irritated for a couple of days, but Im hoping that if I keep doing it, it will 1) help stimulate the meibomian glands, and 2) improve the lipids from a thick gunky substance to more thinner, cleaner.
Ive also tried IPL and Blephex, maybe they helped behind the scenes, but I didnt notice anything.
Sylfaen, the things that helped me to an extent were NAC, Sterilid, and TheraTears Nutrition, and plenty of sleep. But Ive always been in search of something that will rid the problem completely.
Also been considering probing, but not sure about this.

[sleek822]

The ingredients on the bottle are listed as follows: Bayberry, Eyebright, Golden Seal, Red Raspberry Leaves, Cayenne. These are the herbs. The base liquid is Raw organic apple cider vinegar, and alcohol.

You take an eyewash cup such as one you might find at a pharmacy, bundled with distilled water or something. Fill it to the line, add 2-10 drops of the eyewash, and then straight into your eyes, up to 6 times a day.

The more drops, the worse it stings. And when I say it stings, I doubt you've ever put anything in your eyes that stings more than this. However, it is totally worth it. I have not gone a day without using it 6 times in the past 4 years. Not a single one.

Hi Sylfaen
Im looking into buying some of these eye drops. Ive found them on eBay. Did you find that they helped reduce redness in the eyes?