Re: Re Eyes and RP(Cathy)

[Guest guest]

Lucy here, do you find that Conjunctivitis goes along with RP also? I seem

to have " matter " in my eyes of some sort most all of the time. Sometimes it

is worse than others. When I was young, we called it " sleep " in our eyes.

This is just worse than " the average sleep " . I also have a lot of sinus

trouble, could the draining in my eyes be coming from the sinus problem

instead of other things?

Before I was diagnosed with RP a year and a half ago, I had what my Dr.

thought was an allergic reaction to Benadryl tablets (the color in the

tablets). My eyes (lids, top and bottom) were red, swollen, hot, just like

the flares in my ears almost, and my whole face was swollen, especially on

the sides. It took about the same amount of time for it to clear up as my

ears did. After I was diagnosed with RP, I asked if perhaps I had had a

flare in my eyes when we thought it had been an allergic thing.

I continue to have the swollen (puffy) top and bottom lids. My eye ball

itself is not red or irritated. ( That is until I just started talking about

it, it has to start burning, isn't that just like " The RP? "

Liked all of the info. you shared. Thank you and Love and Prayers, Lucy

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.

>

> Take care,

>

> Cath

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

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