Re: New Members & Staph Infections & Eyes

[Guest guest]

Cheryl L and Marilyn and newbie - le

.... thanks for the additional input. The staph was found through a throat

culture, but I waited almost three weeks to see the Dr. after I started having

sore throats. The doctor looked in my ears and told me I had a massive ear

infection. Funny thing, the ear didn't hurt, just the opposite side of my

throat. So, strep brobably turned into a staff infection because I waited so

long. PCP put me on a dose of zythromax pack and I will call him tomorrow to

see if we repeat. I mentioned in another post that Dr. T didn't think this was

related to RP because I have been in a period of remission since October 2000.

I'm on absolutely no pred, no RP drugs and I don't take any vitamins to boost

the immune system. I do take a whole bunch of vitamins on a regular basis and

exercise 3-5 days a weeks. So, I pretty much am blaming this infection on my

lack of wanting to see the doctor!

On the subject of le and eye invovlment .... I kept the following post

from one of our members, Cathy, who has work for opthomologists for over 17

years and has done a lot of research on RP and eyes. Here you go and I hope

this answers some of your questions. I gave it to my opthomologists and she was

greatful to receive the info as she is not experienced with RP patients:

Message: 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 mmediately 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]

Bless you for the eye information.

I was lucky the second time around that I got a fabulous woman, who

took one look at me and said something was seriously wrong. The first

doc said I had a virus and was contagious.. this went on for six

months.. and I kept saying if it is a virus why haven't I given it to

anyone? I lost some sight in my right eye, and it is kind weird

driving at night.. all the backlights on the cars seem to be one big

blurry light, but I am ok during the day.

le

[Guest guest]

Very, very helpful information....thank you so much...Sue Marth