Army Doctor Refuses to Prescribe Doxycycline for Ocular Rosacea

Dr. Frank and everyone else who helped me solve my chronic red
eye/infected eye problem, thank you from the bottom of my heart.

As you may remember, I posted that I was able to get a referral to a
civilian doctor, because I had an eye infection with corneal
involvement (keratitis) that necessitated a rapid follow-up with an
opthamologist to monitor me and make sure the infection was under
control. Since the Army could not provide me with an opthamology
appointment within 72 hours, I was given a one-time "pass" to see a
civlian opthamologist.

I was very fortunate in finding a caring, knowledgeable opthamologist
who also suffered from rosacea/ocular rosacea himself and was very
familiar with my list of ocular complaints. He noted the keratitis in
my corneas and prescribed me six months worth of Doxycycline - 2 100mg
tablets per day. He mentioned that I would probably be required to
stay on a maintenance dose of this for life, since Rosacea is a
chronic, incurable condition and since the lid scrubs and warm
compresses did not work to control my symptoms. He said that if I
went off the Doxycycline, my symptoms would in all likelihood return
fairly quickly.

I was very glad to have this prescription, because I knew that ocular
rosacea (untreated) can lead to serious infections, involving the
cornea and sometimes resulting in corneal perforation and blindness.

I have talked with other ocular rosacea sufferers on the internet, and
looked up some sites about ocular rosacea, and I am aware that the
only therapy available for ocular rosacea is Doxycycline or another of
the tetracycline family, and that it is standard to keep patients on a
maintenance dose for life.

Since my eyes are now clear and healthy and uninfected, my eyes are no
longer in an emergency status and so the Army insists that I use their
opthamologists. It took me two months to get an appointment with an
opthamologist, and I had to travel two hours to Ft. Meade to get to
him, but I was happy enough with this arrangement as all I needed was
for a doctor to note that the doxycycline had cleared up my eyes and
to continue my prescription.

The doctor did a thorough examination, and noted that my eyes are now
healthy. He seemed to doubt the previous doctor's diagnosis of ocular
rosacea, even when I pointed out the rosacea on my face (I made sure
not to wear any makeup so that he could clearly see the growths on my
nose and the many spider veins/tele. on and around my nose). He
refused to allow me to continue Doxycycline on the grounds that
"antibiotics long-term aren't good for you and I can not prescribe
them to a woman of child-bearing age for moral reasons as they cause
birth defects." I explained that I can not become pregnant for
physical reasons (noted in my medical chart which he had but did not
bother to look at very closely) so the birth defect problem is moot in
my case, but he would not be swayed. His treatment plan for me is to
simply treat each infection as it occurs, with eyedrops, and for me to
simply live with the chronic discomfort and bloodshot eyes.

Now, my husband even went in to talk with him, for a good half an
hour. He agreed that I probably had ocular rosacea, and that the
Doxycycline was the only thing that could normalize my oil production.
He insisted that I ought to just wait for a spontaneous remission,
instead of taking systemic drugs. Or just suffer with the rosacea -
that that was preferable to him prescribing doxycycline. He noted
that he NEVER prescribed Doxycycline to patients long-term - that he
would give it for a few weeks, only to clear up an infection with
corneal involvement/ulcers, and never to prevent such infections.

My husband and I are furious that I can not get the help I need for my
ocular rosacea without paying out of pocket for a civilian
opthamologist.

Is this doctor's treatment plan - to simply treat each infection as it
occurs instead of using preventive maintenance doses of Doxycycline -
the current thinking of new opthamologists out there? He was a new
doctor - only a Captain - so maybe this is the new philosophy? I know
that doctors are under pressure not to prescribe antibiotics, but....I
would rather stay on the antibiotics that have chronically infected
eyes.

I am inclined to think the civilian doctor's plan of preventing
recurring infections is a better one than the Army doctor's plan of
"just live with the recurring infections, come in for treatment for
each one."

What is the current thinking on this, please, if I may ask? DId I
just stumble across a "difficult" doctor, am I likely to get more help
if I go to another Army doctor, or is this the new standard of care,
to simply let the patient suffer???

Thank you for letting me rant here. I am very frustrated.

Sincerely, Leora

 

Leora,

I can only relate to my own experience:

I went to an opthamologist to see if my Rosacea was causing my eye
problems - he too had "HAD" Rosacea and said that it probably be cured
with a high dose of Doxycycline for at least one year. Being somewhat
leery of this long use of antibiotics I also check with my own MD and
received his blessing to try.

I took Doxycycline for 12 months and then stopped. It did (as of now -
2 years later) clear up the Rosacea and helped with the eye problems
(other, not related problems now). I realize that there are greater and
lesser cases of Rosacea and mine may have been minor and others may not
get the same benefit of this therapy but it sure seems to have worked
for me.

So I would shop around for some further opinions.

 

I wish the doctor had explained there was a reasonable chance that I
would have a remission of some length following Doxycycline.

The choice, as I understood it at the time, was either to stay on
Doxycycline and have healthy eyes or go off Doxycycline and go back to
having chronically infected, painful eyes. Since the infections were
not only painful but presented a risk for loss of vision with each
ulcer, I understandably wanted to remain on the Doxycycline.

Now I see that there is a chance of remission following use of
Doxycycline, and so I can understand why I might be urged to go off
Doxycycline.

I have called the wonderful doctor back who originally prescribed the
Doxycycline (a civilian opthamologist who is recognized as one of the
top opthamologists in the D.C. area), and while he is aware that some
doctors advocate a pulsed approach (on-off) to Doxycycline, he
recommends that I stay on the Doxycycline for a bit longer as my case
was quite severe. I feel it is reasonable for me to remain on the
Doxycycline for a one year period since my case was so severe. That
will give the Doxycycline adequate time, hopefully, to perform the
long-term changes that might lead to a remission. This doctor, whom I
highly recommend (his name is Dr. Parelhoff) was kind enough to return
my call at home, talk to me at length about my concerns and phone in
an extension of my prescription. He was kind, caring, compassionate,
knowledgeable, concerned about the well-being of his patient and
skilled in communicating with his patient - everything the Army doctor
I went to was NOT. The contrast was unbelievable between the two
doctors.

In a rosacea support group I belong to, a person quoted some
statistics along the lines of, 25% of rosacea patients will experience
a recurrence of symptoms within one month of stopping Doxycycline; and
75 percent will experience a recurrence within 6 months. If those
statistics are true (I was unable to track down any sites with
statistics on this) then my chances of the symptoms coming back seem
fairly high.

If the symptoms do return, after a month or within six months, would
it be reasonable to ask to be placed back on Doxycycline for another
course of 4-12 months? Or are there reasons why a doctor would not
want to place me back on the drug when the symptoms return?

I understand that there are risks of birth defects (stained teeth)
with this drug, but there is no chance I could conceive, so that worry
is not applicable in my case. Is there any other reason to fear using
this drug intermittently for courses of 4-12 months at a time, to be
used whenever symptoms return?

Since there is no other treatment for my ocular rosacea that has been
effective, I am loathe to give up entirely any use of Doxycycline.
The Army doctor urged me to give up Doxycycline immediately and for
all time, but the civilian doctor felt that Doxycycline was an
effective tool in the fight against ocular rosacea. I am more
inclined to believe the civilian doctor is correct, but wanted to ask
here in case there is something I am overlooking or some reason the
Army doctor is so dead set against the use of Doxycycline in fighting
Ocular Rosacea. Of course, if I experience a remission of my symptoms
I will have no reason to go back on the Doxycycline. But if the
infections come back, I still would rather take the medicine than live
with chronic keratitis.

Thank you again,
Leora

 

I see no problem with your assessment - use of medication for a period of
time IF it recurs, unless you are pregnant or ARE AT RISK FOR BECOMING
PREGNANT. Otherwise, toxicity is very low. Continue hot soaks daily for 5-10
minutes 1-2x a day ad infinitum, as this is probably one of the most
effective ways to keep it from coming back once off the medication.


David Robins, MD
Board certified Ophthalmologist
Pediatric and strabismus subspecialty
Member of AAPOS
(American Academy of Pediatric Ophthalmology and Strabismus)

 

Thank you, Dr. Robins.

I wish the hot compresses and lid scrubs would have worked to make my
eyes comfortable before - but they never seemed to make a difference
at all, they only dried out the skin around my eyes until the skin
flaked and was red and uncomfortable (I was very determined to get
healthy eyes so I really really scrubbed and scalded my eyes). My
eyes remained horribly uncomfortable, bright red, and with pus coming
out of them from constant infection.

The doctor who examined me (the nice one) said my margins were clean
as a whistle, I was obviously doing everything right as far as
self-help went, but it just wasn't enough - I still had keratitis from
the rosacea and I needed Doxycycline.

For some patients, the lid scrubs and warm compresses and lid massages
are simply not enough. Am I correct?

Thanks, Leora

 

Yes, for some, hot soaks etc is not enough.

But also don't overdo it- hot, but comfortably hot, for 5-10 minutes, 2-3x a
day. (Some over aggressive pts do 20 minutes 5x a day which will dry out the
skin. If so, a skin cream helps. I also don't do lid scrubs with baby
shampoo usually - I find that it helps very little and irritates the eyes.

If that is not enough, PERIODIC treatment with doxycycline or tetracycline
is helpful, for sure.


David Robins, MD
Board certified Ophthalmologist
Pediatric and strabismus subspecialty
Member of AAPOS
(American Academy of Pediatric Ophthalmology and Strabismus)

 

I don't think that periodic use of low doses of doxycycline will be
harmful to me. I seem to tolerate it well, don't have any gastric
symptoms or yeast infections or any other bothersome side effects.

Also, I am not worried about becoming pregnant. I am not able to
tolerate intercourse because of extreme pain caused by Interstitial
Cystitis, and even if I were raped, I am on the pill (to regulate my
periods so they aren't so bad) so conception is not likely. I'm also
in my mid-40's, an age in which fertility is practically nonexistant
anyway, as women my age who are trying to conceive know very well.
For all of these reasons, the argument that I can't take this medicine
because I might have a baby, falls on deaf ears in my case and I do
not see that as a viable reason for the Army doctor to have denied me
medication.

Cheers, Leora

 

Doxycycline (or just plain tetracycline) can be used long term, bu tnot
permanently. Usually it is used between 4 - 12 months. It does make some
lon-term changes in the oils that may "cure" this for some time.