Eye Flares

[Guest guest]

Eye flares have been my most common issue with RP for the past many years.

The doctors treated it with pred-forte eye drops which worked very well for many years for epi scleritis . When it became scleritis it was more of a problem , but. whatever eyedrops were used to dilate my eyes for an eye exam, made the flare go away and not come back for one year!

You need to find a good (great ?) opthamologist.

Eye flares are horrible! You can't focus well and have pain in the eye and over the eye in your head.

Good Luck- Hope you feel better soon

[Guest guest]

Dear Dagny, Sharon & Kathleen

Thank you so much for sharing about your experiences and your knowledge

re: eye flares and scleritis. It is so wonderful to be a part of this

RP support group, and to learn from each other!

Over the past 2-3 years, I've noticed that I've had an increase in slera

(white part of the eye) bleeding, that does look a bit scarry, but, will

clear up within a week of using steroidal eye drops. There is no pain

(except for a few seconds during the initial bleeding). My

opthalmologist has suggested that it might be due to a side effect of the

prednisone, sort of like skin bruises from the weakened blood

vessels....I've also noticed that on 3 occasions, the bleeding occured

the day after I did some heavy lifting/vaccuming. What a great excuse to

avoid the heavier household chores! <grin>.

However, I am somewhat concerned because I've been having this bleeding

occur every month for the past 7 months! Does anyone else have any

problems with sclera bleeding? What do you find helps you?

Aloha, karen

Date: Tue, 11 Jun 2002 21:02:01 -0400

From: DagnyThrw@...

Subject: Eye flare

Scleritis is a common problem for RP patients. You can wake up one

morning and find one of your eyes (usually one but could be both)

completely bloody red. You need to be under the care of an

ophthalmalogist who is familiar with relapsing polychondritis. You need

to be using prednisolone eye drops, 3 x day until it is under control and

then taper it down per your doctor's instructions. Continued use of pred

eye drops can result in increased pressure of the eye and is a mild form

of glaucoma. The treatment for that is is to use timolol (one drop each

eye at night.) I was seeing my ophthalmalogist every month to start, and

now I see him every 4 months. He has advised me to continue using the

pred drops 2 to 3 times a week even though I am in control now because I

still have the problem, and it is harder to get it under control again if

I have stopped the eye drops completely. Hope this helps!! My eye

doctor is a professor here at OHSU medical school. Take heart!! Love,

Dagny

I am one who flares in my ears almost constantly. I

had a few weeks without flares when I was on MTX

(methotrexate), a few good weeks on Enbrel, and a few

good weeks on Remicade. Sometimes I think I will

never be flare free, so I know what you are going

through. Before diagnosis, I flared for three years

in my eyes. I am still on Remicade and having some

good results, but started flaring again on Monday.

Message: 21

Date: Wed, 12 Jun 2002 12:46:30 -0400

From: katwench@...

Subject: Re: Eye Information

... 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)