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Posted 7/30/2008 2:28 AM (GMT 0)
I was curious if anyone else has experienced eye involvement.  I woke up the other day with extreme pain and light sensitivity in my left eye.  I assumed I had managed to scratch it in my sleep.  Finally, by monday I couldn't take the pain anymore and saw a really awesome eye doc.  He said it was severely inflammed all the way around the eye ball.  He said the lupus had attacked the eye.  He gave me prednisone eye drops and two antibiotic drops and he numbed the eye.  By this morning it was much better.  It was really painful!  My vision is horrible.  He also said the pressure in my eyes is high and he thinks it is glaucoma related to the chronic pred use.  I have to see him again in the morning!  Sorry I haven't been around much.  God Bless you all, Judy
Posted 7/30/2008 2:40 AM (GMT 0)
Judy this is horrible.  I'm so sorry you're in this situation.  This is weird timing, but I was at my eye doctor yesterday for routine exam. I'm being tested for Ankylosing Spondylitis (arthritic condition).  One of the symptoms of AS is severe eye inflammation with extreme pain, redness, and light sensitivity.  My eye doctor said if I have those symptoms to seek immediate treatment. 

 

I don't know if I have AS yet.  But I'm wondering if you have it, do you know? 

 

I sure hope it isn't glaucoma, and can be easily treated.  Please let us know how you're doing, okay?  I'm praying for you.

 

Ginny

Posted 7/30/2008 3:32 AM (GMT 0)
Judy,

Funny you bring this up, I just came on to post a wierd eye ailment dialogue because my left eyelid was swollen last week. My eyeballs themselves have never swollen, but I have had my eyelids swell completely shut in the past. Thankfully never both at the same time. This time, though, my lid didn't get so bad that it was closed. I still don't know why they do it. Anybody?

I also have been experiencing A LOT of twitching in my left eyelid for about three weeks now.

Another wierd eye thing for me is that I get these tiny bumps on the inside of my lids. They scratch against my eyeball, and boy does that hurt. Has anybody ever experienced that?

Robin
Posted 7/30/2008 12:39 PM (GMT 0)
Hi Judy. I'm just adding my eye ailment to your thread. I saw my ophthalmologist two weeks ago because my eyes have been tearing and mattering for several weeks. I have to dab my eyes about every 20 minutes to be able to see clearly. Doc said my tear ducts are draining properly, but oil and dirt were gathering on the rims of the eyelids. He knows I've been having a battle with steroids for mouth/parotid gland problems and he asked if I would use steroid eye drops. I said no. So he has me scrubbing my eyelids twice a day. My eyes still tear, but it's improving. BTW, every few weeks (for a couple of years) I get sharp, stabbling pain in my eyes, but it only lasts 10 minuets or so. Doc says it's lupus. I hope your eye pain and pressure improve quickly Judy. I'm sending prayers and lots of positive energy! Love, Butterflake

Posted 7/30/2008 2:00 PM (GMT 0)
I have severe light sensitivity and I know I need to get to the eye doc. THis summer has been especially bad for me and I notice if I don't wear sunglasses when it is sunny, my eyes hurt and burn. I'm glad the drops helped with the pain - is this something the ye doc is going to have to continue to treat long term?
Posted 7/30/2008 2:50 PM (GMT 0)
((((( Judy ))))) I am sorry to hear you are having problems with your eyes. I didn't realize lupus could attack the eyes so I guess it's true, it can attack anything in our body. I sure hope the meds are helping and you get some answers today. You are in my thoughts and prayers. Take care
Posted 7/30/2008 6:10 PM (GMT 0)
Thanx everyone for your concern and prayers. I went back to the eye doc today. (BTW, he is awesome and very knowledgeable about lupus) The inflammation has improved, unfortunately my vision has not. I have to go back in a week. He wants to make sure I don't have plaquenil toxicity. My far vision is very poor! Please say a prayer that I don't lose my vision. He said if plaquenil toxicity takes hold there is nothing that can be done. You guys I want to encourage you all to keep up with your eye visits. He asked me why I haven't been seeing an eye doc every 4-6 months while i'm on plaquenil and I told him I had so much other stuff to keep up with. It sounded lame to my own ears! God Bless you guys, Judy
Posted 7/31/2008 12:31 AM (GMT 0)
Oh, I forgot you were on Plaq.  Well, it sounds like he's very good and proactive in your care!  What a relief. Finally a doctor we can all love! LOL!

 

At least now you know you must go to the eye doc more often. Let us know how you're doing okay.

 

Ginny

Posted 7/31/2008 1:36 AM (GMT 0)
Judy,

   I'm sorry your having severe eye problems. I hope this clears up soon. You will be in my thoughts and prayers.

                                                              Babs

Posted 7/31/2008 3:16 AM (GMT 0)
Thanx Babs. Ginny, It's a shame that we get soo excited when someone finds a doc who knows and cares about lupus and validates what's going on! It's like you wish you could share them with everyone on the forum! Judy
Posted 7/31/2008 3:28 AM (GMT 0)
No kidding!  A doctor we could all go and see.  I'm just so glad you have him Judy.  You must have a lot of peace knowing you're in good hands.
Posted 8/7/2008 9:22 PM (GMT 0)
I went back to the eye doc today. The inflammation is still not completely cleared up, although it has improved. My vision is not greatly improving as we had hoped. He is going to do some more extensive test in 2 weeks (assuming the inflammation is cleared), to see if the plaquenil has damaged the retina or if the prednisone has damaged my vision.

He said my eyes are extremely dry and gave me 3 different types of drops to try. He did not say I has Sjorgens (sp?). He just said dry eyes and mouth often go hand in hand with lupus.

In other news, I spent the entire night at the ER on Monday night. I got extremely short of breath and my pulse was staying elevated. So, given the fact that I had recently had a pulmonary embolism, I went to the ER. They did another vq scan and thankfully, the clot has completely resolved and there was no new clots! My blood counts have drastically dropped and that is what is causing the sob! I have to have more blood work tomorrow.

I have been transfused twice in the last 2 months. Does anyone else have severe anemia? Is there anything else I should be watching for as far as the dry eyes go? I don't want to overreact! Thank you all! Love ya, Judy
Posted 8/8/2008 12:53 PM (GMT 0)
Wow- just yesterday I went to my rheumy and told him I had an appt set up for my eyes.  They have been really sensitive to light and foggy when I remove my contacts.  This has been happening for about 3 months or so at night when I take my contacts out and is usually gone the next morning.  Anyways, last Friday night my left eye became blurry while I was doing some painting.  I thought maybe I got some paint on my contact, but when I took them out I didn't see any.  My eye was still really foggy.  I was looking in the mirror only to discover that my left pupil was much more dialated than my right one.  Really strange.  So, I did some research on the net involving cases like these and side effects from my meds.  There were some disturbing things out there.  Anyways, when I told my rheumy all of this I also told him that I had tried to make an appt with my local eye clinic and they couldn't get me in until October.  My rhuemy was upset and said it could not wait that long.  He is concerned about glaucoma (whatever that is-haven't researched it yet).  He wrote me a referral for the clinic in his area, but I'm waiting for my local one to call back-its an hour drive and I sometimes get headaches when I drive.  So, I will keep you all posted, and I will be curious to hear what is up with your eyes as well.  Its a liitle scairy for me. 
Posted 8/8/2008 2:20 PM (GMT 0)
Judy

I am so sorry you are having these painful issues with your eye. I hope & pray it will get better for you soon. I am glad you found a good Opt. It is important to find the cause to help prevent future problems. You have reminded me to make appt to see my eye dr., thanks. I am now on Plaquenil reg. (on & off for a year now) but not Prednisone; they wanted me to take pred but the last time I did was for 4 months for the pleurisy and I suffered from side effects of the med. When I had gone to eye dr. a while back, he said he could see a small cataract developing, I am overdue for a ck up.

Along with the Lupus I also have Sjogrens (last 8 yrs) and Diabetes M. and AVN. Sometimes with the SS my eyes get dry and irritated...& I use moisture drops, o/t/c. and I am careful not to rub my eyes, which can be tempting. I also have dry mouth from the Sjogren's, it comes in flares and I take Evoxac Rx (for dry mouth) when I need to...seems to help the eyes as well with moisture. Since you are having so much problems with your eyes perhaps your Rheum dr can check you for Sjogrens if you haven't been checked before which also affects the eyes. It is quite common to have both autoimmune conditions going on at once.

Suffering myself from a pulmonary emb. which I had over a year ago I developed pleurisy...it is awfully painful with much sob still and am very uncomfortable especially at nite trying to sleep . I am allergic to the contrast dye and had a vq scan 4 months ago. I now must take Coumadin for the APS. They attribute all these problems to the APS

You asked about anemia, this year I have also taken the infussions of Furlicet Iron (spelling?) for anemia...I went thru 5 out of 8 treatments (1 @ wk) and developed terrific pain in upper arms and I was taken off it. Still have low BCs. and low Vit D. which I take 1 wk. There is much more....

Our eyes are one of our most valuable assets and we sometimes tend to take that for granted.

God Bless and take care
Carol
Posted 8/8/2008 2:52 PM (GMT 0)
I've had eye problems since I was a small child. My eyes have always swelled shut as though there were golf balls under the lids and I get frequent infections, etc. It goes with the territory.

Babs, how are you doing?
Posted 8/8/2008 8:53 PM (GMT 0)
Carol & Patty,
Thanx for your response and concern. God Bless You, Judy
Posted 8/14/2008 5:27 PM (GMT 0)
Sorry to hear about everyone's problems. I had the same problem with my eyes (inflammation and pain) and found out not only is it the Lupus but also Plaquenil toxicity. I can no longer take the plaquenil (been off for 4 months) and now have glasses from the damage it has done to my eyes. Just keep on top of your visits b/c you want to be able to take the plaquenil for as long as you can (in my opinion) b/c it find it works the best for overall comfort.
Good luck to everyone -- love that I found this site...
Jen
Posted 8/15/2008 12:16 AM (GMT 0)
rere7896,
This site is awesome, you will get lots of support and friends here. We're glad you found us too!

Carol- I had a repeat vq scan last week and my embolism is completley resolved! Yeah! I'm going to try to talk my doc into letting me go back to aspirin. I hate coumadin. It's a pain!

I agree that our eyes are a most valuable asset! We take so much for granted! Judy
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