question about dry eyes

[lorca]

Hi Dr. Bazan,

I was on Accutane for 5 months when my DES occured. I am still having a difficult time with dry eyes 7 months post stopping Accutane. Therapies include warm compresses and lid massages twice daily x few months, non-preserved lubricants, modifying my enviroment, fish oils/flaxseed oil. Started on doxycycline 1 month ago. I was told that I have posterior blepharitis (no ocular of facial rosacea noted by my dermatologist and opthalmologist).

Is there anything else that I can add to this regimen? Also, do you knw of a good optometrist/opthalmologist who is as passionate about dry eyes as you in Toronto, Ontario Canada?

Thank-you

[Justin]

Did you get a chance to see Dr. Caffery?

[lorca]

Sorry for not responding sooner...I just got back from Machu Picchu. It was amazing!

Yes, I did get a chance to see the optometrist that you had referred. She was very good. My TBUT was 8, the Schimer's test was 7. I'm to continue with the same regimen of warm compresses, omega 3, flaxseed, and doxycylline and will f/u with her in 2 months at the end of my doxycylline treatment.

She did mention that from her experience, her Accutane patients have had problems with the Meibomian glands as well as reduced lacrimal gland function. On a positive note, she said that it usually takes 6 mothns to 1 year for aqueous tear production to return to normal. In one of her patients, it took 2 years.

Thank you for following up.

Mary

[Rebecca Petris]

She did mention that from her experience, her Accutane patients have had problems with the Meibomian glands as well as reduced lacrimal gland function. On a positive note, she said that it usually takes 6 mothns to 1 year for aqueous tear production to return to normal. In one of her patients, it took 2 years.

But the patient did get better after 2 years? That's very encouraging news. And it's nice to hear about a doctor who has some specific experience with recovery patterns after Accutane. (Untkicker29, you still around??)

[Justin]

Machu Picchu is on my list of places to see. Everyone I know who has been there has told me it is a must see.

Seems like you and Dr. Caffery will work well together. Thanks for the update!

[untkicker29]

Rebecca,
I sure am still around....Seems like I must be one of the really SLOW healers. I will say things have improved from the onset of dry eyes, but I am no where near back to normal.
Still waiting to find a doctor that truly "wants" to find a way to get me there!!


Lorca, keep us all posted on how things are going. There are several other Accutane induced dry eye sufferers other than myself on this forum that would love to hear some success stories and how you got there.

[Justin]

Untkicker29,

Where are you located, maybe we can help you find a doc like that?

[untkicker29]

I live in the Dallas/Ft. Worth area.

[Justin]

Here is a colleague close by who will help!

Dr. Rich Discoll "You might refer her to our website www.totaleyecare.net or our blog www.theeyedocblog.com if she would like to check up on us."

[untkicker29]

Lorca,
When you have a chance, I would like to ask you some specific questions in regards to accutane and dry eye. Send me a private message when you get a chance and I will respond with some questions.

Thanks!

[RonnieD]

I've had brutal dry eyes since taking Accutane in 1997

Hi Mary,

My name is Ronnie. I live in Calgary. I took a cycle of Accutane in 1997 and have had terrible dry eye problems since.

I have read some of your posts and it appears we have the identical problem.

Over the years I have seen countless ophthalmologists and doctors. My problem has had many labels including blepharitis, meibomitis, and ocular rosacea.

I have tried numerous remedies (lubricating eye drops, lubricating ointments, corticosteroid eye drops, lid compresses, lid scrubs, etc.) and nothing works.

The only relief I can receive is when I am in a warm, humid environment.

I believe one of your posts said you live in Toronto. I have travelled there for business in different seasons. When I am there in the summer my eyes are really good (like they were pre-Accutane). When I am in Toronto in the winter, my eyes are quite irritated. Do you notice a seasonal variability in your level of irritation?

At the beginning of this year I transferred with my company to Los Angeles. My eyes were still extremely bad in Southern California so I decided to quit my job and look full time for a solution.

Since March I have seen eye specialists in San Francisco, Los Angeles, Raleigh North Carolina, and Phoenix.

I recently spent two full weeks at the Mayo Clinic in Phoenix having extensive tests done to determine if my dry eyes are the derivative of a different body ailment (Inflammatory Bowel Disease, etc.). After undergoing extensive tests and paying a fortune in medical bills, the results are that I am in great health and modern medicine cannot explain why my eyes are always so irritated.

I eat well, exercise most days, and have done nothing wrong, except take Accutane.

The only meaningful success with the eyes in the past 11 years was when I went on a cycle of Minoclycline in the spring of 2001. An ophthalmologist told me to take a 6 week cycle of Minocycline with the hope that I might see some positive results after ~ 5 weeks. I was also told to start lid compresses in the shower. I was skeptical, but agreed to try the program.

I went home and had a ridiculously hot shower for nearly an hour with the hot water running on my eyes most of the time; this was mid morning.

That night I took the first Minocycline pill, and within ~20 minutes my eyes suddenly felt perfect! Not only did my eyes suddenly feel great, but so too did my nasal passage.

This great success was maintained for 7 days and I couldn't believe that I could finally live my life again hassel free, so I started to wear my contact lenses.

At the end of each of the first two days of wearing contact lenses (days 8 & 9 on the Minocycline), I would take out moist, flexible lenses at night.

On the third day of contact lense use (day 10 on Minocycline) my eyes got irritated again and I took out dry, sticky lenses.

Once the eyes became irritated again, there was no more relief, though I continued with the Minocycline and stopped wearing contacts.

At the end of the 6 week Minocycline program I went back to the prescribing ophthalmologist who could not explain why the Minocycline would have worked immediately and then stopped working.

I have tried subsequent cycles of Minocycline, but seen no positive results.

Every doctor I have retold this story to over the years doubts my recollection, saying Minocycline does not work that quickly and it was probably a placebo effect; I am 100% convinced the Minocycline was immediately effective and was not a placebo effect, especially given my skeptical nature before trying the program.

I have been given a prescription of Doxycycline (part of the Tetracycline family, similar to Minocycline) and am about to start this program, and have, probably wrongly, great expectations that this will work. If not, I will have to move to a year round warm, humid climate to try and experience some kind of health success.

Other symptoms I have include reduced vision at night, bloodshot eyes/red eyes, variable vision throughout the day, and a frequent foreign body sensation.

If you come across anything that brings you success, can you please share with me!!!???

Thank you, and hopefully you will want to discuss either via message board, email, or phone in more detail. I can make my contact information available upon request.

Ronnie

[Anthony16]

Hi Dr. Bazan,

I was on Accutane for 5 months when my DES occured. I am still having a difficult time with dry eyes 7 months post stopping Accutane. Therapies include warm compresses and lid massages twice daily x few months, non-preserved lubricants, modifying my enviroment, fish oils/flaxseed oil. Started on doxycycline 1 month ago. I was told that I have posterior blepharitis (no ocular of facial rosacea noted by my dermatologist and opthalmologist).

Is there anything else that I can add to this regimen? Also, do you knw of a good optometrist/opthalmologist who is as passionate about dry eyes as you in Toronto, Ontario Canada?

Thank-you

Hi lorca,if u dont mind me asking has your DES improved at all over the years?I see you dont post much anymore so maybe things have gotten better?Im in the exact same situation as you were.My doctor said that it could take years but that accutane patients usually do recover although its very very slow.However,there are a few on this forum who havent so that worries me a lot
Thanks

[lorca]

Hi,

It's been almost three years and my symptoms are better but not to the point where I was pre Accutane. I see my optometrist once a year for follow up and objectively, my tear production is still low and my MGD glands are still plugged but subjectively my eyes feel better overall. I'm not taking fish oils any more but may restart and do warm compresses once a day if I remember. Have your symptoms improved and what is your regimen?

A doc on this site once said that it may take 2-4 years to recover. What was the timeline you were given? Im going to wait longer and may get punctal plugs in the future.

Regards

[Anthony16]

Hi,

It's been almost three years and my symptoms are better but not to the point where I was pre Accutane. I see my optometrist once a year for follow up and objectively, my tear production is still low and my MGD glands are still plugged but subjectively my eyes feel better overall. I'm not taking fish oils any more but may restart and do warm compresses once a day if I remember. Have your symptoms improved and what is your regimen?

A doc on this site once said that it may take 2-4 years to recover. What was the timeline you were given? Im going to wait longer and may get punctal plugs in the future.

Regards

Thanks for replying!
So would u say that ur quality of life has improved much over the last 3 years?Are u able to continue with your studies without too much hassle?
I will say that in the last 6 weeks things have very slowly im proved.Before that,every day was really bad.Now its usually 7 bad days followed by 3 good days(although i had 5 good days last week)
My regimen in non pres eye drops,warm compresses(which i only started 2 months ago) and omega 3s.I hope to try punctal plugs soon.

My doc said that patients usually do recover but it can take a very long time
Thanks

[lorca]

Yes, I would say that my quality of life has improved. When it first started, I had really bad burning sensations, and the cold sensations on my eyes from being in an air conditioned environment was terrible. Now, as long as the aircon is not directed at my eyes, my eyes don't feel irritated for the most part. I do have more better days than bad days and relatively, my bad days now are not as bad as before. Overall it has been manageable.

How long have you had this for? I hope that things continue to improve for you.

All the best.