Please help!!! Doing everything right while my eyes are getting worse every day!

[Ariel]

I've been on doxy 100mg a day and cyclosporine at 1%, and every kind of eyedrop there is including autlogous serum at 20, 50, and 100%. I take all the supplements, do the eyelid hygiene, and everything else on the book and three months after doing it religiously my eyes are getting worse.

Is this normal? I have blepharitis and the only time my eyes are okay is when I have them closed during my sleeep. During the day they are red and the itching and burning is awful.

i feel the doxy is not working but it looks like there is no other antibiotic for me to take. I was in the hospital a few years ago for something unrelated to DES and I was told that some antibiotics did not work and it took them days to find one that did so I'm afraid doxy could be on of those antibiotics I don't respond to.

What else could be wrong? Is there an end to this??? i wish I were dead. It would be such a well deserved vacation from all this!!!! Supposedly a lot of people suffer from dry eye but I walk down the street and I don't see anyone that looks like me. This just isn't right so what am I missing?

[calli66]

Just a thought---stop using the cyclosporine for a few days and see how your eyes feel. Just from my own experience with Restasis---I tried it for months and months, and the the worst blepharitis I had was during that time. It's really strong stuff. It made my eyes red, burning, and horribly dry.

Calli

[Ariel]

Thank you Chemia and Calli ---What you said is very interesting. I just came back from the emergency room because my eyes got really bad and what they said to me is that they look very red and irritated because I'm putting too much medicine in them. They said this without knowing how many things I'm putting in them but I guess my eyelids can't lie.

I was diagnosed with blepharitis seborrheic and keratitis punctata and I was told to stop everything I've been taking and use only FML for seven days and Aquoral single dose vials.

[regina]

i agree...

I used to take oils...but stopped...and vitamins but stopped...except for one a day.. ... and all sorts of eye drops...but I stopped and my eyes dont get as red after a day of work. They are still dry..but for me...the less I use..the better my eyes look. Good luck ariel...i know you have been struggling so! <3

[Ariel]

Regina--- I've been trying to take everything that could help me. Perhaps less is more.

[msienkiewicz]

Ariel,

Less was more, especially for me. I was able to eventually wean myself off of all drops. I used ice cold compresses when my eyes burned the worse, and this really seemed to help without putting something directly in my eye.

Best wishes,
Melissa

[Ariel]

Melissa--- I've been feeling like I had to fight this condition from every possible angle. I don't know how I feel about doing nothing. When you eyes are burning it is hard not to look for something to make the pain go away.

I need to educate myself on seborrheic blepharitis because as it appears to be the mother of my DES. The more I know the easier it should be for me to win my battle against it. I also need to find a doctor I can trust and that still hasn't happened.

Thanks for your note.

[Rebecca Petris]

Ariel, I'm sorry you're in such a hard place right now.

I think that it's a common mistake among people with dry eye & MGD to overdo treatments, putting everything and the kitchen sink in their eyes simply out of desperation. Almost everyone goes through this compulsive stage at some point. Some people can do this without hurting themselves too much but a lot of people are made worse or at the very least they delay the potential for improvement.

I think it's important to go slow with any medical treatments for dry eye:

• One at a time (if possible)
• Carefully observe how you're doing with it in case of any increased irritation
• Keep it going for a lengthy period to give it a proper chance

The way to live through that process is to have an arsenal of things that make you feel better that AREN'T medical:

• Cold compresses
• Saline rinses (unpreserved of course)
• MOISTURE CHAMBERS
• [insert your favorite drug-free eye soother/painkiller]

Aim to keep 'pain control' SEPARATE from 'treatment/drugs' (to the extent possible) because otherwise when you're in a bad pain place you'll be inclined to overdo the drugs.

[magoo]

Ariel, a few months ago I stopped ALL the drops and treatments (I do use nonpreserved saline when absolutely necessary)because I was not getting better and actually was worse, much worse.

I have been on Azasite and Lotemax, they both made my eyes MUCH worse. Every treatment that has been prescribed or recommended has simply made things worse.

Since I stopped all the drops I actually have good days once in awhile and I have slowly been trying things - ONE AT A TIME - again and giving each thing a long trial, at least a month.
This way I know what it is that I cannot tolerate and what helps.

Slow down, please, Ariel. Over treatment is just as harmful as no treatment, in my experience.

[littlemermaid]

Punctate keratopathy

Ariel:[QUOTE][I was diagnosed with blepharitis seborrheic and keratitis punctata and I was told to stop everything I've been taking and use only FML for seven days and Aquoral single dose vials. /QUOTE]

Keratopathy is not under control, cornea is being damaged by dot lesions, danger of erosions. Self-medicating. Does anyone know a specialist ophthalmologist in Spain who can treat him? What about Prof Juan Murube del Castillo as a starting point? http://grupos.emagister.com/debate/ojo_seco/6783-374899 http://www.theocularsurface.com/editorial-board.html

[salsera]

moisture chambers

Ariel i can totally relate to your desperation, as I am sure can many people on this board. Although I haven't been suffering for DES for that long, I have it quite acutely and can honestly say that the ONLY thing which is getting me through this right now is my WILEYX glasses.

I am in them 24-7 and although this is not how i want to live the rest of my life, it allows me to manage on a day-to-day basis....and that counts for a lot at the moment.

[Ariel]

Thank you Rebecca, Mangoo, and Salsera--- your support means a lot to me. I didn't post my thanks to you sooner because since I developed keratitis punctata it's a lot more difficult for me to look at the computer monitor.

Littlemermaid--- you recommended I visit Dr. Murube del Castillo, which I have already seen. We have a "Plug a doc" thread" ---If we changed the name to to "Pluck a duck" I would be happy to include Dr. Murube in it.

[RobLIC]

Hey Ariel. I'm the president of the put-too-much-crap-in-at-once club. It's part of our personalities, right? I'm a high-strung NYer by default. We have one way of handling problems that seems to work in many of life's situations ... so why not this one?

Dr. Latkany preaches "stop everything" and I STILL find it hard to do. I have been messing around with higher doses of cyclosporine the last few months. It burns so much in any dose that you really wonder if the cure is worse than the disease ... and I don't know a lot of docs who think it does much good anyway.

It cannot be easy to hear - it isn't for me - but the one thing at a time approach has to be the best way to deal with this. And all the things everyone else has said, the stuff to get you through one-day-at-a-time, ice packs and MCs and (for me, anyway) sclerals, will be the things that give you enough distance from the pain to make better decisions for yourself. And long live the chilled saline rinse ... the only guilt-free liquid in the arsenal.

[ringo]

punctate keratitis and acute inflammation

Dear Ariel,

1% cyclosporine drops is a high concentration and it can inflame even non-inflamed eyes, but certainly it would irritate even more dry and inflamed eyes.

That is why doctor prescribed it for me with FML, it helps the eye get accustomed to the cyclosporine and potentiates the antiinflammatory effect while inhibiting the sensitivity reaction from the cyclosporin.

Also, without the steroid induction, cyclosporin can take quite some time to arrest the inflammatory process going on in dry eyes. In the meantime, if it's bad enough, the inflammation can spiral up out of cotrol, and then only a course of steroid drops can bring it back to tolerable.

Cyclosporin is a long-term slow acting ophthalmic drug. For acute inflammation (from what you seem to be suffering), that also causes the punctate keratitis, doctors were right to prescribe the FML, as it is fast acting and quite safe among the steroids. You can continue taking the cyclosporin with the FML after one week only on the FML as you taper it down over the next month.

In my opinion and from my experience--you should not stop the FML after only a week-- again thats my experience only. Taper it slowly, so as not to cause rebound inflammation, which is worse than the initial one and happens so often in dry eye patients.

You can successfully intorduce cyclosporine to your eyes during this process. My doctor prescribes FML for a minimum of a month in chronic inflammation eye diseases. For acute eye diseases a week is acceptable. Chronic conditions respond differently and need longer therapy.They simply keep coming back and need longer suppression.

In the case of steroids, once you start them withdrawal has to be careful and only after the inflammation has been put under control.

FML is the perfect choice for treating erosions and punctate dots, which precipitate erosions.You should continue taking the doxy as well, as that might be the only reason why you do not have erosions yet. Doxy+FML is the textbook treatment for ocular surface erosions, combined with lubricants of course (gels, drops, etc) and other palliative measures.

My erosions were severe, and treated for 2 months with FML, doxy, and tobradex ointment at night. They never reappeared thank God. Before this course of treatment no matter what I tried, they were persistently plaguing my eyes, and turning my life into hell on earth.

I think that the last doctor you have seen is quite good (the one who diagnosed ypur punctate keratitis and prescribed the FML wihtout the cyclosporin for a week. That will really be a vacation for your eyes, though they might need more than a week most probably to feel any real difference.
You can reintroduce the cyclosporin at any time you feel your eyes are much better while still on the FML. Thats the trick doctors use to make one tolerate higher concentrations.

I would not give up on the autologous serum, the doxy or the cyclosporine. You need to give it more time, treatments for dry eyes take time to notice a difference.
I am more than certain (again this is only my opinion) that with all this inflammation, it's owing to the autologous serum and the doxy you only have dots as defects on your cornea, and not full blown erosions.

In some people, inflammation is not a big part of their dry eye experience--it is there in every dry eye, but some sufferers can do without antiinflammatory therapy and still do not get major erosions ( i mean their ocular suface does not deteriorate significantly from the dryness). That is why the disease is classified into different levels and categories.

For those unfortunate people like me, who develop corneal defects in their field of vision as soon as they stop the antiinflammatory drops-- well, it is a difficult choice to stop all drops cold turkey.
Because if scarring occurs in one's central filed of vision, corneal graft would be needed, and corneal grafts require very strong steroidal and immunosuppression, and can still be rejected by a chronically inflamed eye.
I would not want to see myself or anyone a corneal graft candidate due to dry eye inflammation that has gone out of control and devastated the eye surface ( i mean scarring in the central field of vision).

I have been hospitalized with indescribable pain that was there whether they eyes were closed or open exactly due to the danger of such scarring.

Some people, especially those who are developing corneal defects, do need treatment, and urging them to stop all medications cold turkey is the worst thing.
Switching to FML in your case (according to the textbooks and my painful experience) will help halt the progression of the punctate keratitis and control the inflammation and sensitivity reaction to cyclosporine.

If allowed to progress, when punctate keratitis and minor erosions develop into frank erosions, one will need much stronger and greater amounts of steroids and medications to control that.

I was not getting any treatment at the time that happened to me. So doctors allowed my disease to progress out of control, and the inflammation to devastate my eye surface.

I do not want to see anyone in the same situation, so this is just a cautionary message from me. Not every dry eye is the same, and while something works for some, it may even hurt others.

However, development of corneal defects combined with acute inflammation points in one direction-- inflammatory process must be halted fast to prevent the problem of recurrent chronic corneal defects and/or scarring to the eye.

Sorry for my long message, but I do care for you and want you to treat this stage of your illness with great caution.

Dani

[magoo]

I hope my post was not interpreted as urging Ariel to stop everything cold turkey. I was relating my experience to emphasize what my advice is; to SLOW DOWN.