Trying to cope with MGD/posterior blepharitis and feeling a bit hopeless

[ladyoracle]

Hello, everyone! I am SO thankful to have found this website and the forum! I have been researching my issues/symptoms endlessly, and it's just wonderful to have a place to go where I know we are all in the same boat, so to speak.

A brief history... I have been dealing with sudden onset MGD/posterior bleph since October of 2011. I returned from a vacation with my husband in England, and began noticing soon after that that my eyes felt unbearably dry. At first, it seemed situational, but eventually, became pretty constant. I was under a fair amount of stress at that point, b/w the traveling, returning to a horrible, freak Halloween snowstorm that caused us to lose power for several days, and just dealing with starting a new job...

I have always had allergy-related "eye issues", mainly in the summer and early fall, and taking antihistamines did the trick this past summer. I would wake every day with a filmy feeling over my eyes, but no major dryness, aside from some occasional nighttime burning that didn't bother me too much. I have also recently (last week) been tested for allergies, and I am allergic to trees, weeds (namely, ragweed), grass, and dust mites. I know that many of us here probably are, as a matter of fact. I have also just begun immunotherapy for allergies, as I suspect my MGD/bleph could be related...
So, for my eye treatment... I was given the whole range of drops (not all at once, mind you) initially: steroids (shocked at the price!!), allergy drops, Restasis, lubricant gel drops, Azasite, and now I am using FreshKote, which seems to be more helpful than anything else. My regime now includes: warm compresses, cleaning lids with baby shampoo (which also causes burning/dryness at times!), massage, FreshKote drops 4 times/day, and lubricant drops in between. I take nutritional supplements--flaxseed and fish oil--and just started on an amino acid called NAC. I had about two weeks recently where I felt a HUGE change had occurred--I not only wasn't as "aware" of my eyes as I had been, they weren't burning horribly all day long, every day! The dryness remained, but the burning had subsided noticeably.

Then, last Saturday, the burning and severe dryness crept back... Then it flared with a vengeance. Granted, I had just gone in for allergy testing and allergy shots and had to take Allegra one day and Benadryl two other days, so... Wondering if I triggered something? Today isn't great, either, but I haven't taken Benadryl in about 2 days.
I will see my eye specialist again next week, as I called to let them know about this flare-up... My doc refuses to put me on doxy, as I tend to have GI issues, and he said he's not certain it would even work. Does anyone else use doxy for flare-ups? If so, have you had luck?

I just want to know I'm "normal" in this whole process, and that I'm not the only one dealing with the burning, dryness, and seemingly random flare-ups. Any recommendations from those of you who have been coping with this for longer than I have would be greatly appreciated! Does anyone suspect their MGD/bleph is connected to allergies?
Also, I have never had "crusty" or flaky lids with this condition, nor do my eyes look particularly strange, unless I am having a bad day of burning and have been constantly applying warm compresses.
Another thing... I did have a bout of anterior bleph about 9 years ago... Wondering if this condition has just been "dormant" in my body for years, and decided to come out in this particular way!

[Alan27]

I was told by the Ophtalmologist who diagnosed me with MGD/Posterior Blepharitis that Blepharitis calms down during spring and summer and flares back up in winter, there is no cure for Blepharitis/MGD only treatments to relieve the pain/discomfort, all you can do is do the compress and massage treatments indefinitly and keep the occular surface from getting irritated by keeping them humidified with eye drops.

[ladyoracle]

Thank you, Alan. How are you managing lately? Do you live in a dry climate? The summer was pleasantly humid here in Massachusetts this past year, so nothing really flared for me until that freak storm we got in October... It's sad to think there is no magic bullet cure for our condition, but I guess it's good to know how to manage the symptoms. Do you feel that yours was caused by allergies, by any chance? I am still doing my research on this...

[jenny2008]

no you are not the only one.. i have mgd plus sjogrens... been ill since i was 32-am 37 now..
i live in a humid climate but my mgd still flares up bad esp in cold months but in warmer months like now i get the seasonal allergies off and on really bad!!!!

yes it seems most people i hvae met with MGD have allergies as well..it is a double edged sword.. nice to meet you..hang in there ok?
i do my warm compresses to try and keep the glands open andfunctioning but sometimes have to follow up with a cold compress to calm the eyes down-esp my left eye.. it is the drier of the two

[ladyoracle]

Hi, Jenny, I know a fair bit about Sjogren's, and I'm sorry you have to deal with that disease... We are the same age (I will be 37 in August), so I understand being young and coping with chronic issues. I've had chronic pain in my past, due to a knee fracture. However, this eye situation feels even worse in some ways, perhaps b/c we have to use our eyes constantly!
At any rate, it's wonderful to have your input and support; it's nice to know I'm not alone, though I hate to think of others going through this situation!
It does make a lot of sense that it could be allergy-related and flare up worse during the winter... Obviously my came on during a cold snap here, so...
Does anyone receive allergy shots that are helping their MGD/post. bleph?

[Alan27]

Thank you, Alan. How are you managing lately? Do you live in a dry climate? The summer was pleasantly humid here in Massachusetts this past year, so nothing really flared for me until that freak storm we got in October... It's sad to think there is no magic bullet cure for our condition, but I guess it's good to know how to manage the symptoms. Do you feel that yours was caused by allergies, by any chance? I am still doing my research on this...

The first signs started between October 15th and October 20th while I was reading a novel at first and then while I was watching TV. No I don't think my case was due to allergy, rather it was dry eyes (caused by nasal decongstants side effects) that after awhile led to Blepharitis. I don't live in a dry climate, but I use convectors and electric radiators to heat my house, those are known to cause dry air.

I have only started the treatment 12 days ago, but I can already say that it brings alot of relief and the chronic irritation on the conjunctiva I have had since October is finally starting to go away.

I also changed my diet a little bit, I drink two glasses of freshly pressed carrot juice in the morning and in the evening, I also eat smoked norwegian salmon. As both help against Blepharitis.

[MLE]

Hi there,

I was also getting allergy shots and it flared up my dry eye TREMENDOUSLY, in particular my MGD, which was mild before I started the shots. In fact, my reactions to the shots became so severe that I had to quit getting them, which I'm very disappointed about, because I truly think allergies are a big culprit in my disease.

If you can push through I say finish the allergy shots and get to maintenance phase and see what happens. I've also been putting lotemax OINTMENT on my lids and making sure to heat/express twice daily and the swelling seems to have subsided somewhat.

Good luck,
MLE

[ladyoracle]

It's wonderful hearing all of your stories and input. I love the idea of the smoked Alaskan wild salmon, Alan. I don't enjoy carrot juice, but so glad it's working for you. It's great trying different things and seeing what "fits".
MLE, it makes sense that you flared up horribly from immunotherapy. I had the next level up of shots yesterday, and my eyes almost immediately flared en route home after the appointment... Today is not so great. However, my MGD was HORRIBLE from the beginning, so things have actually calmed down a bit overall b/c I am now doing proper treatment. Or at least trying to remain consistent with the supplement, drops, compresses, etc. Sometimes the warm compresses feel a bit "too much" on my eyes, though, I have to say.
I will definitely stick to the immunotherapy, as I feel that it'll help in the long-run,
Alan, it makes sense to me that your condition flared after taking decongestants for so long... I fear the combo of using antihistamines DAILY from spring through summer and using my contacts daily caused my MGD/posterior bleph to appear (with a vengeance!), too... I am cursing myself now for using the antihistamines SO frequently, but at the time, they really helped overall... Sigh.

[Joseph]

I have been prescibed Azisite from my opthomoligist and have quite a bit of improvment with the burning and itching of the eye lids. This might be something to talk to your doctor about. Best of luck and hang in there..

[christinea]

Dear All,

Three different ophthalmologists diagnosed me with Blepharitis and prescribed the usual treatment regimen including eyelid scrubs, steroid drops, etc.

Unfortunately, it only got worse over the years. My eyes were always red - my co-workers probably thought I was drinking or smoking (I wasn’t). Dark bags under my eyes made me look 20 years older than I was, it was terrible.

After suffering for five years I decided to read everything that I could find on Blepharitis and found two guides that changed my life! The first was an ebook written by Dr. Banerji called “How to treat Blepharitis & Eye Allergies and live symptom free”. I found it at blephguide.org. The second was written by Dr. Latkany on dry eyes.

After reading these two books, I actually made an appointment in NYC to see Dr. Latkany. It turns out that while my symptoms were that of Blepharitis, eye allergies was the primary cause and was contributing to my problem. I then tackled my eye allergies with the help of an allergist and an allergy shot regimen, and after six months am finally living symptom free!

I truly wish the same relief for everyone that reads this posting.
Blessings to all,
Christine A, Florida.

[MLE]

After reading these posts I think I'm going to grin and bear it and go back to the allergy shots. I have found with the unseasonably warm spring we are getting here in MI my MGs are flaring up anyway (even without the shots) so as long as I feel lousy, why not throw in the shots too and try to push through them. I was doing them twice weekly before to try to get through ASAP and perhaps that was part of my problem- I was just pushing things too hard. I'm going to try backing to once weekly or even once every 10 days if I need to to give my eyes time to settle down between treatments.

I've talked to so many people on this forum and in person that benefitted tremendously from shots that I really feel they are my last hope. I just wish they didn't take so long!
-MLE

[ladyoracle]

MLE--have you gone back for immunotherapy yet? It's definitely not a joyous experience with the old eyes, but I truly do feel that, in the long-run, it may well help immensely... I have had some flare-ups since I began the shots, but I try to avoid antihistamines at all costs--I feel they only make things worse, and I think that they were a huge contributing factor to the onset of my MGD/post. bleph... I wish I had known all of this way back in spring of 2011--I never would have taken them daily!
I agree--spacing out the shots may help a lot. I generally wait at least 7 days, though lately I have been stretching it to 9 or 10.
It's hard to say at times what causes me to have a bad day. Last night was pretty unpleasant for me, though not totally out of control... A good day is when I can manage to wear my contacts briefly (they never feel quite right, though, so I just "test" them), don't have intense burning all day long, and can "manage" the dryness/pain with my medley of drops, supplements, the compresses, and lid massage.
Good luck, and I REALLY hope the immunotherapy helps you, MLE!

[Jelena Ristic]

Hi I'm really sorry to hear about your issues with MGD. I went through basically the same thing a year ago and NOTHING worked except MGP (Meibomian Gland Probing). I've written an article on it, and long as it is, I'm cutting and pasting it here for you. I hope it fits. If not please e-mail me at dryeyeinfo@gmail.com and I'll send you the whole article. It is extensively researched and referenced with information from some the best resources on the internet (medical - not blogs) on dry eyes. If you have any questions, don't hesitate to contact me. I hope you find some answers with MGP. In the meantime, I hate to tell you that all those meds you have been put on may be making your situation worse! They did mine.

EDIT: Here is a link to this member's previous post.

[ladyoracle]

Thanks, Jelena. I will have to figure out if my eye specialist is aware of this procedure and could possibly do it.

In the meantime, I'm in the midst of a bit of an MGD "flare"... Anyone else?? I am still undergoing immunotherapy and the allergy season is upon us here in Massachusetts, so I'm sure those factors aren't helping.

[MLE]

All-

I tried another go at immunotherapy- with my allergist putting me on a custom load over 40 WEEKS. However, even with this I flared up AGAIN and had to discontinue. Apparently 10-20% of the population never becomes immunotolerant during immunotherapy- and maybe this is me- so I'm hoping with a combination of avoidance, pataday, and steroids as needed I can deal with the allergy thing.

My eyes have become a nightmare. I am in severe pain all morning with endless tearing and have to wear goggles or big glasses and constantly dab out my eyes and apply soothe. I am unable to work. Last week I made an appointment to see Dr. Maskin for MG probing, as I really think that the shots are behind this huge downward spiral with my eyes. I was fairly comfortable and only had "mild" MGD before I started the shots. I am so encouraged by the posts of several people who have had great success with this procedure, because I am literally at the point of my life being turned upside down by this- potentially giving up my career, severe depression, and definite effects on my family life with me having to miss many of our family activities. Wish me luck.
-MLE

[ladyoracle]

OH, no, MLE--that is so upsetting! I am so sorry you are going through all of this right now, and that you were unable to continue with immunotherapy... It does sounds like it might just not be the right "fit" for you, but that you are trying other avenues... I hope that things improve!!
I was doing much better for weeks, I have to say, even through this early onset allergy season and my allergy injections... I was even able to wear my contacts fairly frequently a couple of weeks ago, but also knew when to remove them and stick to my glasses. However, this week I am experiencing a fairly unpleasant flare-up, and I'm a bit down about it. It's mainly burning and dryness... The burning bothers me more than anything, I must say. I haven't done anything differently, so who knows what is going on.
At any rate, thinking of all of you!!

[littlemermaid]

Good luck MLE ~ thanks so much for keeping us posted about your thoughts about hypersensitivity; this is where we are too and it's really helping.

[ladyoracle]

Is anyone else having a flare-up of their MGD/posterior bleph lately?? I was doing really well for weeks on end, even able to wear my contacts quite often, and both of my eye docs (regular and specialist) could see that my tears were flowing more freely and that my eyes were nearly normal. However, in the past several days, I am experiencing a pretty bad flare-up, manifesting itself in the unpleasant burning (like hot oil is coming out of my eyelids), some dryness, and blurred vision. I have been doing what I normally do in terms of a routine, so I have to guess that it is allergy-related... So frustrating, though, and I'm getting rather depresse again. I have to say, I have been more emotionally stressed lately, due to some family health issues and work-related stuff, and haven't been sleeping as well... Wondering if these factors might also be contributing to the flare!