Re: Eye Flares/

[Guest guest]

Hi ,

I've never had this problem so don't have any

suggestions except to stay in close touch with your

opthamologist. That's scary! But hey, if it gets you

out of housework.....NOT!

I'm having eye problems again after my eyes doing well

for two years. I'll have to call my eye doctor if

this continues.

You take care and let us know if you get any answers.

Love, squeek

--- " A.C. Lau " wrote:

>

>

> 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

>

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