Re: Eye Information

[Guest guest]

... here's a post I have on eyesMessage: 15

Date: Sun, 10 Jun 2001 15:51:02 -0400

Subject: Re Eyes and RP

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.

Hope this helps ... Just me, Kathleen (NY)

[Guest guest]

Kat, thanks for Cathy's post. I had found it too and sent it to Russ. I

hope he lets me know how his appt goes tomorrow. I will pass on any info I

get.

Thanks everyone for helping him out.

Kathleen, I bet you are so busy getting ready for your move. NY to Calif!!

I hope we can meet one day. Heck it is only about 6 hours from me, maybe we

can meet for lunch someday. LOL I would really like to meet you.

Hey...maybe you can give me a quick lesson in quilting. LOL I'm still

trying.

Thanks again.

hugs