Re Eyes and RP

[Guest guest]

Hi Everyone!

Cath here. Just trying to catch up on e-mails and have been seeing

questions on RP and eyes. Since I have worked with ophthalmologists for

17 years as a technologist, I'll try to condense what may be some

answers in what I have read and observed.

RP can cause conditions that cause the outer white part of the eye (the

sclera) to become red and very painful. If can hurt even when you move

your eyes in different gazes. This is often common in system disease

such as Lupus and autoimmune disease. This condition is usually treated

with prednisone drops for the eyes.

Iritis and Uveitus are also conditions associated with system disease

such as RP, lupus, RA etc. This is an inflammation inside the anterior

or front portion of the eye. This can also cause redness, but often is

associated with severe sensitivity to light and painful eyes. This can

become very serious if inflammation is allowed to progress and is

recurrent with no set pattern of reoccurance. This is usually treated

with prednisone drops and dilating drops. The dilating drops paralize

the ciliary muscles that cause the painful symptoms. I have seen many

patients with lupus and RA present with this problem at least 5 year

prior to their systemic diagnosis. It can often be the first signs of

systemic disease and testing is normal until later in their life. If a

patient is seen once for iritis/ uveitis no systemic work up is done,

but if they return with it again, a complete rheumatology work-up is

usually recommended. Again, that is often negative until later in the

patient's life. In very severe cases of iritis/uveitis, we sometimes

have to do prednisone injections into the eye ( we can numb the eye so

it's not as bad as is sounds). The pupil can become very distored and

irregular from recurrent inflammation and some people are not able to

get off prednisone drops without causing a flare. Some are on

prednisone drops the rest of their life, just on lower dosages of once

or twice a day. Depends on each individual. These individuals are in

need of having regular glaucoma checks also because prednisone as we

know can cause an increase in eye pressure and lead to having glaucoma.

Usually if only on drops, it takes quite a while for this to happen (a

couple years or so) but needs to be monitored also. If diagnosed with

glaucoma, please don't panic. There are many new meds out there to

treat and it doesn't mean you have to go blind or lose vision anymore

(some good news!)

People with increased sed rates have to worry about a condition called

temporal arteritis which can rob you quickly of your vision. This is

something which seems to be associated with RP from my research as well

as arteritis that can cause quick hearing loss. The damage done from

this is usually permanent and is not reversible. I have seen patients

lose functional vision within 24 hours when they have a severe case.

When in doubt, always call your ophthalmologist immediately when sudden

vision loss is noted in one or both eyes. This is something that must

be treated immediately with large doses of pred 80mg or so and the

sooner the treatment, the more chance to preserve the vision. I am not

a doctor so I can not advise, but can only give my personal opinion that

if I had a sudden loss of severe blurring of vision or decrease in my

hearing, I would take 40mg of pred immediately and get to the doctor.

Only problem is that most won't know what RP is and it takes time to get

bloodwork back to verify sed rate and temporal arteritis.

Ophthalmologists usually go ahead and start treatment without

verification of temporal artertitis since damage can be so severe and

they feel it is safer to error on the side of caution.

Temporal arteritis can also be associated with headaches, neck

stiffness, jaw sorenes and loss of appetite. These are usually the

questions that we ask when working up a patient for possible temporal

arteritis. A dilated examination may reveal a swelling of the optic

nerve, but in most cases, the eye itself looks fine. What is happening

is that the arterities that feed blood to the eye is so inflammed, that

the blood flow is restricted to the eye and the eye starts to become

damaged from loss of bloodflow. From my research, this is also what

happens with the ear.

One note for people who are diabetic is that diabetes can cause a change

in vision when blood sugar is elevated. Elevated blood sugar causes the

lens of the eye to swell and makes people more nearsighted, blurring

their vision. Some people I know can monitor their bloodsugar by just

their eyesight (wouldn't recommend this way!), but if you have blurring

in just one eye, it most likely is not from diabetes, because it is

systemic if blood sugar is elevated, it will affect both eyes. If only

one eye, something else most likely is going on.

From my research, this can also happen to the ear itself and that

arteritis can occur many places in the head. I do personally believe

alot of the headaches that RP'ers have many be a result of an inflammed

artery somewhere in their brain. Depending on when it is, the symptoms

will change. I personally have episodes where one eyelid will droop and

I will lose feeling on that side of my face from my eyebrow to my

cheek. If feels really wierd and a very good neurologist I saw who does

rare research in this area said it was most likely caused by a multiplex

neuritis or inflammation that is a result of the RP. The face and brain

have so many nerves and arteries that any of them can become inflammed

and cause this. So far increase in Ibu usually resolves this, but have

had to resort to pred when that doesn't do it. I do know we have had a

couple people who have had Bell's palsy which is a paralysis of one side

of the face. This all does seem to correspond and make sense to me when

looking at the big picture of RP.

Another avenue which autoimmune disease can cause is severe dry eyes.

Sjogren's disease is often seen in these people. The body does not

produce enough tears to keep the eyes comfortable so the body tries to

fix it and produces a secondary type of tear, but this one is not

lubricating and just runs down your cheek or causes tearing. I know

this sounds ironic, but the treatment for this is artificial tears.

These tears are more lubricating and will help. The best brands I have

found are TheraTears or BionTears. These seem to help people the most.

Celluvisc is very good at night to use, but is more thick and can cause

some blurring of vision which is why it is good at night. If eyes are

extremely dry you can get and artificial tear ointment called Lacrilube

or Refresh PM and put in at night. The eye does not produce tears when

we sleep and if the eye is very dry, the eyelid can stick and cause

recurrent erosions or areas that stick and essentially cause a corneal

abrasion. These are very painful. Using artificial tears several times

a day can help people with very dry eyes. Also helpful can be punctal

plugs. They actually close the punctum which is where tears are drained

into the nose. This helps keep what tears you do have on the eye for a

longer period of time. If interested, I'll explain in more detail

about these, just ask.

Sorry to do such a long post, but am not always able to get to all the

e-mails and respond as I would like. I do want to try to help those who

are suffering with eye problems if at all possible, so thought this

might help.

Again, I am not a doctor. I am an certified ophthalmic medical

technologist who has worked with ophthalmologists for 17 years. I am

not diagnosis or recommending anything here, just want to try to help

get information out that I see on a daily basis and give input on what I

have found in my research. Always contact your doctor immediately with

any problems and insist that you be seen. I know they won't like you

for it, but we have to live with RP and need to make sure we are taken

care of. Take any literature and articles you can find with you to your

ophthalmologists office also. Make them read and personally, if all

else fails, prednisone usually helps most of our symptoms in one way or

another and most our docs let us use as needed, I will always error on

the side of caution.

Hope everyone is doing well and prayers to all that God watches over us

and works towards healing our bodies and finding doctors who are

compassionate and interested in our disease.

Take care,

Cath

[Guest guest]

Cath, thanks for all the great information. What would we do without

you??? You make everything so easy to understand...

Hope you and Caitlin are having a great weekend and hope things are better

for you. You are both in my prayers. Did your mom come to visit.? Did

you ever find out anything about your last episode? You know I worry about

you.... Hope you are doing better. Let us know.

hugs