Frustrating day, not sure what to do...

[kitty]

I saw my eye doc, got a new surface type plug that is irritating as heck. He was ready to end the appointment when I reminded him about my recent diagnosis of ocular rosacea, made by the 2nd opinion ophthalmologist that I saw. I was able to read on the computer as my doc read the scanned document. The ophthalmologist recommended Azasite for my ocular rosacea. He also diagnosed me with MGD which he did not tell me about. My eye doc decided he does not want to treat the rosacea right now. He does not think my eyes "look red enough". He wants to wait and see if the plug improves my comfort (I have had plugs for 3 years with no improvement in my comfort ). He also did not make any comment about the MGD. I was so angry I did not want to discuss it right then. I'll think about it at my follow up in two weeks. Now tell me, should it not be the doctor that makes diagnoses and recommends treatments and self-care measures? Is it up to the patient to research their own condition and determine what self help measures they should employ? I'm seriously considering seeing another eye doctor for the dry eye, one here locally who at least has written some articles on the subject. Maybe I'll just order some doxycycline online from one of those no prescription needed places and save myself the hassle and the co-pay.

Have you all gone through such similar frustrations in getting a proper diagnosis and treatment recommendations? I'm so sick of this. Thanks for letting me vent.

[irish eyes]

Hi Kitty

I wish I could make you feel better but I feel like this constantly.

I tried to `vent' to a friend about it the other and realised that my vocabulary was also exhausted - I just had to give up.

Keeping calm with consultants is something I need to rehearse; I go back to see mine in around 10 days and I'm already `measuring' my response.

If you get hold of some doxycycline, I hope it helps.

Take care in the meantime. We all must do that.

[pjcortes]

Hi Kitty,

I feel your frustration. I have been there. I have been told I had conjunctivitis, allergic conjunctivitis, blepharitis, conjunctivichalasis, and mgd. I do not know what to believe. I have not heard ocular rosacea yet. but I have a feeling that one is next. I have a doctor's appt next week with a new doc, so we will see what he says. I have tried most things, so I am not sure what else to do. Hang in there! Finding a doctor with a strong interest in dry eye would be a good idea. I just know I have wasted so much time and money (with specialists) looking for answers and I still do not know what is really wrong with me

Jennie

[kitty]

Thank you. I guess misery loves company. I have decided to find a new doctor. I'll keep doctor hopping until I find one that is not just focused on plugs and drops. I'm starting with one recommended by someone here. I think I may have to see my current doc one more time to have this new plug removed though. I wish you all the best.

[mjf79]

Perhaps you could get some of the antibiotic from a dermatologist. I'm sure they deal with ocular rosacea as well. I've done 2 weeks of azasite and feel that it lessened the worser symptoms (especially the feeling like acid was on my lid margins.) I still feel that I need the oral as well, but the azasite did help, so you may want to give it a try while you find a new doctor.

[Rebecca Petris]

INow tell me, should it not be the doctor that makes diagnoses and recommends treatments and self-care measures? Is it up to the patient to research their own condition and determine what self help measures they should employ?

That's the dilemma of modern medicine... at least in terms of badly underserved disease groups like this... in a nutshell, isn't it.

I think moving on is a good call. In my opinion a doctor does not need to know it all to be useful, but they do need to be an active, willing co-investigator, be ready to acknowledge when treatment is not working, and, crucially, be able to work with you on establishing appropriate benchmarks. In so many cases with dry eye those benchmarks must include, and sometimes be described exclusively as, symptoms, not just clinical signs (staining & such). It sounds like this doctor's got the all too common preoccupation with what the corneal surface looks like without considering discomfort levels very seriously.

[kitty]

Perhaps you could get some of the antibiotic from a dermatologist. I'm sure they deal with ocular rosacea as well. I've done 2 weeks of azasite and feel that it lessened the worser symptoms (especially the feeling like acid was on my lid margins.) I still feel that I need the oral as well, but the azasite did help, so you may want to give it a try while you find a new doctor.

I have thought about it, but my co-pays are $50! By the time I pay the co-pay and purchase the Rx, I could purchase two Rx's. I think if I am going to be out the co-pay, it should be used to start treatment with a doc who sees DES as more than a "nuisance treatable with OTC drops and plugs".

[Meebo]

Hi Kitty,

I feel your frustration. I have been there. I have been told I had conjunctivitis, allergic conjunctivitis, blepharitis, conjunctivichalasis, and mgd. I do not know what to believe. I have not heard ocular rosacea yet. but I have a feeling that one is next. I have a doctor's appt next week with a new doc, so we will see what he says. I have tried most things, so I am not sure what else to do. Hang in there! Finding a doctor with a strong interest in dry eye would be a good idea. I just know I have wasted so much time and money (with specialists) looking for answers and I still do not know what is really wrong with me

Jennie

WOW! almost in the same boat over here. reputable dry eye doctor says ocular rosacea/mgd, last doctor says allergic conjunctivitis! pataday works sometimes so DEF an allergic component. allergy tests show cat, dog, and feathers are definite 100% allergic. gave me alamast, i have acular which has not done much and pataday as i said has not done much.

ready for this? google "cat dog feather" and click the write ups about how SYNTHETIC pillows have showed to contain more pet allergens than feather pillows.

I get closer everyday.......

[mjf79]

Kitty, I have felt so much better with a competent doctor who listens to me and gives me helpful advice. None of the three previous doctors said anything about blepharitis and mgd, and it turns out that this was my main problem...not aqueous deficiency. This doctor immediately recognized the problem, gave me practical tips for maintenance, and prescribed the azasite and most recently doxy. I can't tell you the difference this has made in my life. I can now see again and don't have the horrible discomfort i had before. I mentioned to him that no one else mentioned these problems, and considering some people's obvious symptoms, my eyes do not LOOK that bad (even though they feel horrible.) He said that he bases his decisions on reported symptoms, and not just how the eyes look. I tell everyone this to encourage ya'll to find someone who listens to you and will give you the help you need to find something that will improve the quality of your health and life. I am only 29, but have had some pretty serious health problems in the past, and I have finally understood what my mom has told me since I was a teenager...that I have to be my own advocate, as no one else will be. I know my body best. It took 3 doctor hops, but I finally found results. What is I had given up and taken what the other docs told me without following through? I'd still be pretty miserable.

[kitty]

Kitty, I have felt so much better with a competent doctor who listens to me and gives me helpful advice. None of the three previous doctors said anything about blepharitis and mgd, and it turns out that this was my main problem...not aqueous deficiency. This doctor immediately recognized the problem, gave me practical tips for maintenance, and prescribed the azasite and most recently doxy. I can't tell you the difference this has made in my life. I can now see again and don't have the horrible discomfort i had before. I mentioned to him that no one else mentioned these problems, and considering some people's obvious symptoms, my eyes do not LOOK that bad (even though they feel horrible.) He said that he bases his decisions on reported symptoms, and not just how the eyes look. I tell everyone this to encourage ya'll to find someone who listens to you and will give you the help you need to find something that will improve the quality of your health and life. I am only 29, but have had some pretty serious health problems in the past, and I have finally understood what my mom has told me since I was a teenager...that I have to be my own advocate, as no one else will be. I know my body best. It took 3 doctor hops, but I finally found results. What is I had given up and taken what the other docs told me without following through? I'd still be pretty miserable.

Thank you for giving all of us hope! I'm happy that you have found a doctor and treatment that are helping you.

[kitty]

Update: I believe I have found HOPE!

I had another frustrating day with my current eye doc. He had promised to revisit prescribing me doxycycline at this visit. Instead, he decided a different type of plug was in order for my left eye. Still no mention of the MGD diagnosed by my second opinion doc. I just sat quietly while he spent more time special ordering a "smart plug" and entering info into his computer than he spent examining my eyes and developing a treatment plan. I walked out angry, and went shopping. That is always so therapeutic. I decided to follow through on my promise to myself to find another doctor.

I have been corresponding with an O.D. online who authored an article on punctal plugs, one of many articles he has written. I noticed in the article that he lives close to me. His eye clinic website states that he specializes in the treatment of DES. I asked him what his approach to diagnosis and treatment is. This was his reply:

"Thanks for your inquiry.

My treatment philosophy is really based on the type of dry eye with which each patient presents.

The first consideration is environment (allergens, diuretics, behaviors...). Then we look at skin and eye lid problems (rosacea, blepharitis, blink and lid apposition...). Finally, the tear layers. Often only one of the three tear components is deficient. Systemic inflammatory disease is also addressed (rheumatoid disease).

As far as treatment, I look at OTC drops and plugs as adjunct treatments. Most often we are treating lid disease with hygiene, Omega 3 supplements, low dose/high dose Doxy, antibiotic/steroid, Metrogel, etc. The tears may be treated with Restasis, FreshKote, or other drops.

The website, which unfortunately you didn't get to see, is about 75 pages of excruciating detail ranging from patient management to current research and controversies, to novel approaches such as Lacrisert and Salagen.

So, it is difficult for me to summarize my approach to a given patient except to say that I try to do a detailed diagnostic workup and tailor the treatment plan to each patient."

So, my current doc STARTED with the adjunct treatment and never got to determining the cause of my DES. You can't believe what a relief this email was to read.

I emailed my old doc and told him I decided to live with my current plugs, then called and scheduled an appointment with this new doc. At least until then I have hope that I have not had in the last four years since being diagnosed with DES. I'm so looking forward to a complete diagnosis, thorough explanation of what is causing my DES and things I can do to manage it better. I'll try to post an update after I see him on 3/31.

[jsalad]

Good for you Kitty! I'm so glad you took control of your destiny! I just did the same thing a couple weeks ago when my "then" doc said "this just might be as good as it gets." That was my final straw. I researched dry eye specialists online and found someone who finally diagnosed me. The reason why I have dry eye is ocular rosacea and MGD. My last doc just wanted to treat with drops and plugs. BTW - I have 4 smartplugs in and no relief. In fact, sometimes I have tears overflowing my eyes but they're still as red as a vampire. Clearly something else is going on!! So...now I have this new doc, who's given me doxycycline and we're trying a steroid treatment as well. Hope your appointment went as well as mine did...good luck!

[msienkiewicz]

I too had a frustrating day and am new to this site. I had a cyst aspirated from my eye that did not heal well. I swear it is cutting my lid. The doctor is trying to convince me that it is only eyelashes. IT'S NOT!!!!!

Long story short I put an ear drop in my eye in November that caused these cysts and dry eye to develop.

PAIN!!

I have been on restasis for 2 months, and the dr. prescribed lacriserts, but I can't get them in my eye.

Any suggestions...

[kitty]

Good for you Kitty! I'm so glad you took control of your destiny! I just did the same thing a couple weeks ago when my "then" doc said "this just might be as good as it gets." That was my final straw. I researched dry eye specialists online and found someone who finally diagnosed me. The reason why I have dry eye is ocular rosacea and MGD. My last doc just wanted to treat with drops and plugs. BTW - I have 4 smartplugs in and no relief. In fact, sometimes I have tears overflowing my eyes but they're still as red as a vampire. Clearly something else is going on!! So...now I have this new doc, who's given me doxycycline and we're trying a steroid treatment as well. Hope your appointment went as well as mine did...good luck!

Good for you JSalad! I hope you find relief. You might want to consider removing at least two of the plugs, if not all four. If they are not helping, having all four might be trapping inflammatory products in your eyes making them feel even worse.

I completely forgot to post the outcome of my first appointment with my dry eye specialist. He put me back Lotemax for a month. He plans to start Doxy then and taper me off Lotemax over a two week period. He removed the plug that was bothering me, said it was not the right kind of plug for me. I asked him to irrigate out the other one, but he wanted to leave it in for a bit for a couple of reasons. One, the Lotemax will reduce inflammation and thereby make it easier to remove. Second, he wants to see if there is any difference clinically between my plugged eye and the eye that is no longer plugged. I see him again in a week. I don't know what if anything else he has planned. He did say I have really bad MGD. He tried to express my glands but was not entirely successful. I was surprised that it took 10-14 days for the Lotemax to kick in this time. In the past it always helped within a couple of days. For now I am the most comfortable I have been in over a year. I hope this continues beyond the Lotemax!

[mjf79]

Good for you JSalad! I hope you find relief. You might want to consider removing at least two of the plugs, if not all four. If they are not helping, having all four might be trapping inflammatory products in your eyes making them feel even worse.

I completely forgot to post the outcome of my first appointment with my dry eye specialist. He put me back Lotemax for a month. He plans to start Doxy then and taper me off Lotemax over a two week period. He removed the plug that was bothering me, said it was not the right kind of plug for me. I asked him to irrigate out the other one, but he wanted to leave it in for a bit for a couple of reasons. One, the Lotemax will reduce inflammation and thereby make it easier to remove. Second, he wants to see if there is any difference clinically between my plugged eye and the eye that is no longer plugged. I see him again in a week. I don't know what if anything else he has planned. He did say I have really bad MGD. He tried to express my glands but was not entirely successful. I was surprised that it took 10-14 days for the Lotemax to kick in this time. In the past it always helped within a couple of days. For now I am the most comfortable I have been in over a year. I hope this continues beyond the Lotemax!

I have kept my plugs in (lowers) and am glad that I did so. Now that the inflammation is down, I believe that the plugs are preventing dryness. I did have aqueous deficiency as well. Part of my ocular rosacea is evaporative dry eye, where dry spots occur due to the uneven spreading of the oil glands due to blockage. I am going to continue to try to keep the plugs in, knowing that they are always removable later should I choose to do so. Just wanted you to know that I've had success with the plugs and doxy...though I had debated and questioned alot whether I should get the plugs out. The plugs were put in by a previous doctor, who was just doing the "usual" dry eye treatment without diagnosing me properly. I found my new doc who instantly diagnosed me with ocular rosacea, and he wanted to keep the plugs in as well, suggesting that once the inflammation went down, they would help me maintain a higher level of comfort.