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**lizlou29** · 24-May-2013, 04:42

So after a really miserable few months which have basically sucked all the enjoyment out of my life I'm left considering my options...

I have seen six different NHS opthamologists and one private in the last few months. I'm not sure what has suddenly caused a flare up in this condition that was fairly mild (more of an inconvenience than life-changing) up until February this year but on my last visit to the eye clinic 4 days ago the consultant actually stated that the MGD is very severe. He showed a family member who came with me how the MG's look when he pressed them (obviously I couldn't see the screen myself) and it was described as a yellow glue like substance. I also have AD. At present I am on Doxycycline 100mg once a day (have been for 5 weeks), I take flaxseed oil and fish oil daily. I have a problem with warm compresses as I have ocular rosacea (red eyelids) and they seem to aggravate my eyelids. The consultant said if it's really an issue I should try a facial steamer then lid massage. I said that this will cause a flare of the rosacea on my face and he said yes but you may only be red for an hour or two after, he didn't seem to think this was a problem even though a flare is painful and my MGD is caused by rosacea (well I assume it is) and if the rosacea gets worse wouldn't the MGD? (who knows I guess). Anyway he wanted me to try cyclosporine again, I stopped it as it made my eyes more sore but he said that would go after a month or so, I'm still hesitant. He said no to Aztyer (I kept asking) as he hasn't seen enough evidence that it will help. As understanding and personable as he was he said I need to find an eye drop I get on with as then I can just drop every couple of hours and go about my day as normal, wow wouldn't that be nice. Sadly I'm in pain everyday no matter what drops I use, this has taken over my life and wakes me at night so I get no respite. My work is suffering as I keep taking time off. I have insomnia anyway but it's got worse because of worry over my eyes as well as the pain keeping me awake. I have no social life now, I used to love going to the cinema, for dinner, shopping but can't do any of those things now.

So.....although it is eating into our savings I've booked an appointment for a Lipiflow consultation. I have changed my mind about 10 times as to whether I should go ahead with it or not. If it could provide me with 9 months of relief then I wouldn't have thought twice but reading reviews from others on this forum it seems that it is a bit hit and miss, i.e it helps for a few weeks, a few months, no difference and for one person actually caused damage. There are of course a couple of people who have joined the forum, said it's amazing and where they had it done and never posted again, I choose to ignore those ones as I am naturally skeptical! I fully expect to go to the consultation and they will say I am a perfect candidate as they will be wanting to recoup the money paid out to get the equipment into their clinic. I told the receptionist I have punctal plugs and rosacea to check if that is a problem and she said they will go through all that in the assessment. Well I don't want to pay for the consultation only to be told I am not suitable for the treatment because of something I could have told them about before they examine me.

I guess my thinking is that if I have the treatment, carry on on the doxy and keep improving my diet then I'm doing all I can to help myself. If i don't then I will be left wondering. If anyone who has had the treatment could comment on whether they felt it was worth it I would be really grateful.

**browneyesblu** · 11-Jul-2013, 16:00

So many people on this site have such good advice, I'd really like your opinions on where best to have Lipiflow.

My doctor, who is a corneal specialist and treats a lot of dry eye patients, just got a Lipiflow system and offered me a treatment, including the Lipiview test, for $1300 (both eyes). Also interest-free financing for a year. Still expensive but less than I've seen it offered anywhere else. I'm thinking of taking him up on it but I'm hesitant because he has no experience with the system and maybe that's important? Maybe better to spend a few hundred more and go to someone who's been doing it for years and knows what works best in terms of pre-treatment, post-treatment, etc.?

Am I being too analytical or could that matter? I don't want to waste the money and not have it work because I didn't want to spend a little more.

**Dog2012** · 29-Jul-2013, 22:56

Hi Guys,
I just did this procedure at UCI in CA...Does it gets worse before it gets better ?..it is 4 days gone but still eyes worse then they were before i did procedure !
PLEASE any advice ??
Thank you for your time !

**thirstyeyes** · 14-Sep-2013, 07:59

I had Lipiflow last November. Immediately after the painless procedure, the ophthalmologist proceeded to manually express each and every meibomian gland and it was extremely painful. However, until recently, I have had such relief that the exorbitant price and pain was worth it. I am contemplating going back for another session.

I'm wondering if other doctors do the expressing of the glands afterwards and if that is why I had such a good result.

**Katewest** · 30-Oct-2013, 18:54

I am getting lipiflow tomorrow in Provo Utah. I have MGD and ocular rosacea. Doc's have told me my eyes don't look that dry. I do have red veins and red lids though so they sure look red to me! I called ahead and requested a full mb expression after b/c the doc doesn't usually do that. Another user on here had it done and thinks it helped and plus I know my glands are blocked and/or thick meibomian. I'll post after but will give it some time before I say if it helped or not. 1700.00 is A LOT to spend. I'm also going to ask when insurance will start covering it. More and more docs are getting lipiflow and hopefully insurance kicks in soon.

I had a lipiview done a couple weeks ago from a different doc who said 85% of my glands had atrophied! I am really hoping this is not the case but it will be interesting to compare numbers.

**lizlou29** · 15-Jan-2014, 03:31

I recently had a conversation via social media and further emails with an eye clinic in the US who were promoting Lipiflow on Twitter. Obviously they were keen to promote the treatment and said the only patients who had seen no improvement were those with a partial blink. Everyone else had some relief even if only temporary but they recognised it was a chronic condition. My issue is that they were promoting as complete relief for up to a year. I know I'm not the only one who hasn't been helped by Lipiflow and yes I have aqueous deficiency as well as moderate to severe MGD. Also, people who come to this site are likely to have dry eye on the more severe end. However I'd like a rough idea of how many people on here have been helped by Lipiflow so...

After your Lipiflow treatment did you feel:

1. Significant improvement
2. Minor improvement
3. No improvement

Lipiflow caused more inflammation in my eyelids so I was actually worse for a week then went back to feeling exactly as I did before treatment but I gather that is quite rare.

**Santaklauzz** · 15-Jan-2014, 05:53

Hi all,

I'm a 19 year old engineering student and a chronic dry eye sufferer from Belgium.
I have been lurking around on this forum for some time without commenting much, but I had Lipiflow and probing done last week, so I thought I'd share my experience with you.

My problems began with soft contact lenses about 3 years ago. After 1.5 years of wearing them very comfortably every day, my eyes began to feel dry.
Eventually, I couldn't tolerate them anymore and I had to switch back to glasses. I thought that was were my problems would end, but after one year of almost no symptoms,
my eyes felt dry even without the contacts. It worsened and worsened and I saw lots of different ophtalmologists from the local hospital and the university hospital alike.
I tried steroids, vitamin A ointments, anti-allergetics etc... but nothing really worked. Frustrated and with drier eyes than ever, I went to prof. Baudouin's practice in Paris.
They came to the conclusion that I have evaporative dry eyes because my schirmer is normal but my TBUT very low. That's when I realized I probably have some form of MGD.
But they didn't even bother to look at the glands, even when I asked them to. But they found inflammation and allergy on my ocular surface though and send me away with, again,
steroids and anti-allergetics and with the promise they would give me cyclosporine if it didn't help. And it didn't.
I had already made a new appointment, but in the mean time, my eyes where still dry as hell. And after lots and lots of research I became more and more convinced that MGD was my problem.
So I made an appointment with prof. Geerling in Duesseldorf, who does Lipiflow and MG probing. I had the procedure a week ago.The probing was very uncomfortable. It hurt like hell and it was very difficult to keep
my eyes open under the very bright slid lamp. The Lipiflow was much better. I was surprised that it took such a short time though. And it didn't feel hot at all. After the procedure, my eyes were very inflamed though.
But I have still no relief at the moment. I probably should give it some more time, because the doc said they evaluate the procedure after 3 months.

From what the doctors said and from what I have read on the internet during all these years, I came to the following conclusions about MGD:

- MGD is a big cause of dry eye. Some figures hint at 80% of the dry eye population has it in some form. It is a progressive disease and it needs to be treated as quickly as possible.

- MGD can be caused by allergy/inflammation/hormones/rosacea... the list is endless. So getting yourself tested is always a good idea.

- If MGD progresses, the gland orifices will close (because of scar tissue?). If you don't open them, the glands will eventually die off, so get yourself probed as often as needed!!
(The doctor who did the probing said when they are blocked, the glands will atrophy. I guess because of the increased pressure building up inside of the glands)

- If MGD progresses, your glands, which are relatively long tubes, will become shorter and shorter and will produce less and less, until they disappear.
-> Warm compresses seem to halt this proces. Prof. Geerling believes they are essential to keep the already short glands from becoming shorter and disappearing.
-> This is confirmed by studies. I read a study a week ago which concluded warm compresses can double the lipid layer thickness. The meibomian gland area remains unaltered.
-> You can view the anatomy of your MGs with the new meibography technics. (I think this will become a major research tool in the future to research what medication can improve the MG anatomy.)
So if you can, have a meibography done to see what remains of your glands. I haven't done this yet, because I don't know where to get this done where I live.
But the doctor who did the probing said my glands are very short. He only used the 1mm needle to get through the plugs.

- MGD causes the tear film to dry up, creating dry spots all over the cornea. This will reduce the amount of goblet cells on the surface of the cornea, thus leading to an even more unstable tear film.
Also, your remaining tear film will become more salty and this hyperosmolarity will kill even more goblet cells/gland cells.
-> Using artifical tears (I prefer systane balance or ultra) without preservatives could be a good way to reduce the damage on your goblet cells
-> Dryness also leads to inflammation? But I'm not quite sure of that. My understanding of corneal health (staining, goblet cells, consistency) is not that good...

- Inflammation is BAD. It could be on of the reasons your MG's stop working, it can reduce your aqueous tear layer and it has a negative impact on basically all the epithelial cells in all of your glands.
-> inflammation is induced by hot compresses.

I have this a lot. Then my eyes go from veeeery dry to just burning and tearing.
-> Maybe cyclosporine could be an effective way to get rid of the inflammation and get on with your warm compresses. And there is always topical steroids, but perhaps you should keep those to a minimum.

- Doxycycline could alter the consistency of the meibum and make it less thick. It's also good to reduce inflammation

- Supplements may or may not help, but after trying all kinds of things, I don't think they are that essential for most people with serious MGD.

The above is roughly my thinking process of the past years. The things listed above are imho essential to keep your MGD from worsening. But it's hard telling what is the cause of MGD.
This disease is so complex and yet there is so little doctors know about it. I guess you guys can relate to this. Everything I learned about it is from my own research.
That being said, I feel there is a lot of research going on, lots of hopeful studies and new understandings and I really think there is hope.
As I see it now, there are 3 drops on the market that could prove to be helpful:
- Cyclosporin: ideal to control the inflammation. This could also benefit MGD which is confirmed by a few studies.
- Azithromycin: effective in controlling staph induced MGD/blepharitis. It also has an anti-inflammatory effect and penetrated the tissue with a high efficacy.
- Diquafosol: Stimulates basically all the epithelial cells: goblet cells, cells of the MGs and cells of the tear glands alike. So it has a triple function!
-> This is the only medication that has clinically been proven to increase meibomian gland area!
-> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3664386/
I would love to try this and my next step is to ask my regular doc to have it ordered at an international pharmacy because it's only available in Asia.
I'd like to check out cyclosprine and azithromycin too. Has anyone tried one of these for MGD?

So an all around MG workout would consist of:
- warm compresses 2x a day
- intraductal gland probing 2x or 3x a year (or as often as needed)
- doxycycline 50mg 2x day
- cyclosporine chronically and/or azithromycin periodically to control the MGD
- long term diquafosol treatment to cure the MGD (or at least increase your MG area)
- supplements like high vitamin D, multivitamins, multiminerals, 1000-2000mg of fish oil a day, flaxseed oil... but I don't think this is the most important part
- Scleral lenses to get you through the day..? I'm currently looking into this option as I don't expect to be cured from this disease anytime soon
and my daily life is affected at such a level that I'm truly desperate for relief. But I've read articles that state that MGD patients experience only limited relief with sclerals.
This could also be a good way to increase the overall health of your cornea and goblet cells and have a better tear film when you're not wearing them.

Imho, all of the above is essential to control and improve this terrible condition.
It's a pity that so few ophtalmologists are into this area of ocular medicine. It's really tough to get a good diagnosis, let alone prescriptions for medication, especially when it's knew stuff.
And Restasis and Diquas aren't even officially available in Europe... But as I said, I'm confident that MG treatment will significantly improve in the next years so I keep on dreaming and researching.
Thank you for taking the time to read all this. If you have any thoughts, remarks, questions... please comment and get the discussion going! I'm after all just a patient looking for answers, just like you.

Cheers

**spmcc** · 25-Jan-2014, 12:09

There's a new study out of Germany on LipiFlow: http://www.sciencedirect.com/science...42012414000123

It found that a single LipiFlow treatment is as least as effective as a 3-month, twice-daily lid margin hygiene regimen for MGD.

However, I think the most interesting thing about the study is it was observer-masked. I can't think of another LipiFlow study that was blinded/masked.

On another note... because I always compare LipiFlow and probing, I'm wondering if anyone knows of an observer-masked probing study.

I know that asking for double-blinded would be next to impossible (Sham LipiFlow probably could be done. Sham probing probably not).

Just curious and wondering about the future of these boutique treatments.

**Roe72** · 03-Feb-2014, 16:26

So...the adventure continues. I had Lipiflow done on 1/22. I went to the Southern Eye Center in Hattiesburg, MS. The dr's name is Dr. Cameron Griffith. They did the Lipiview first. My scores were miserable, 27 in the left eye and 37 in the right eye. Dr. Griffith said my meibomian glands were plugged (capped he called them). Also, I have mild to moderate atrophy. They expressed these (the lower ones) with the golf club instrument everyone talks about. It is painful but bearable. After that a large amount of money was extracted from my wallet ($1,700 total for everything). Then the Lipiflow procedure was done. It was not painful but my eyes were definitely freaked out for a few days (about 4). They knew something had been done to them and they were not happy about it. The only change I have noticed so far is that the fluid is much more liquid and not thick and goopy like it was. That being said, I can't say I have improved at all yet. Dr. Griffith said he is seeing best results at 3 months out so I guess I still have some hope. I wonder why none of the other (multiple) opthamologist's, cornea specialist's ectera that I have seen over the last 2 years never bothered to say that my glands were plugged up and needed to be expressed. I mean, they weren't going to work! They were completely plugged! I actually felt and heard them pop open. Another thing I wonder about...I know my eyes are way drier at night but why, when they are full of all kinds of drops and goop (Refresh Pm, artificial tears etc.) and I am lying down with them closed, why do they still hurt so bad that I am frequently in tears and can hardly get to sleep. Anyone?

**EternalTears** · 05-Feb-2014, 21:13

confidential

**EternalTears** · 15-Feb-2014, 13:49

If you want to waste your money, donate to a lipiflow center and DR. 2 weeks and no difference. No wonder med ins. companies refuse to cover it. Its main use is for folks with mild MGD otherwise you would be better off giving it as a charitable contribution and write it off. I researched this lipiflow propaganda for a year and had 3 opinions and 2 lipiview tests and fell for the bait. There are No shortcuts. I have moderate MGD but mild symptoms that began 6 years ago. Some say to wait 4 weeks to see how effective the lipiflow is but I have doubts things are going to change.
I went to Gavin Herbert UC Irvine Eye Center and had 1 eye done. http://www.eye.uci.edu/lipiflow.html. I deserve the embarassment

**peter56** · 22-Feb-2014, 11:02

Hi all interested how the companies do promote their products:

Please have a look at:

http://www.youtube.com/user/tearscience/

DEEP module 6 and 7 - did not find the other modules.

These are recommendations for ophthalmologists, how they should promote and sell the
Lipiflow treatments to the patients etc.

What they do not tell the ophthalmologists is, how they should treat their patients after
getting Lipiflow. Like the eye masks and ointment for the nights to prevent
the rapid reclosure of the MGS etc.

For mild to moderate MGD Lipiflow may help very well. But these kind of marketing and promotion
strategies are really strange!

Peter

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