my eyes hurt!

[Fairykissez]

I seen my eye dr today for my plaquinil testing. He did the schwimmers (sp?) Test and even though I've been on restasis for a year I scored 0 in both eyes. So I ask him why do they hurt so bad? He said "I don't know" he said he didn't see any reason for my eye pain and that we could try an antiinflamatory drop to see if that helps. Ok but he's still not addressing the dryness or offering me any solutions. I use drops all day, I use the gel at night, I use the restasis twice a day and its not helping. Ugh maybe I need a new eye dr? He also said it was not necessary to come get an eye exam every six months because in all the 19 years he's been practicing he's never seen anyone have damage from plaquinil. Ughh so frustrated and I wanna pop my eyes right out of my head!

So should I find a new dr? Are there any drs who would specialize in sjogrens?

[gardenlover]

Perhaps, but my doc is pretty well the same.  I'm on Restasis too with a 0 score in both eyes.  They just keep saying to lubricate.  I use the night gel all day, too.

[slccom]

My eye doc prescribed doxycycline; it helped, but I don't have the problem to the degree that you have. Have you tried to increase the humidity in your environment? I'm so sorry you are hurting so much. I wish I could do something for you.
Hugs, Sharon

[eye2dry]

If your eye pain is d/t dryness...has anyone mentioned to you to get plugs in your tear ducts? It helped me alot, so I then had them permenately closed with cautery. It keeps what tears you do have (or eye drops) on the surface of your eye longer instead of draining away thru your tear ducts.

Also, my rheumy told me that methotrexate could help me with my eyes...the inflammation. I went on it almost a year ago and my eyes aren't nearly as blood shot as they once were.

As someone else here said...increase your humidity in your bedroom/house....as well as,   cover your eyes with sunglasses or goggles on windy days, don't point you cars heat or A/C vents toward your face.

Don't use eye drops with preservatives.

It sure is hard to get the eye discomfort under control sometimes....I wish you good luck.

eye2dry

[4Kids]

Have you tried cod liver oil, fish oil and vitamin e? What about the dry eyes supplements someone posted about here? I take Salagen as well and that helps. That said, my mouth is my issue.

[Crymeariver]

My eye doc is the kindest, most compassionate person and really feels for me but knows that there is nothing more he can do.  Restatis IS the recent big break through and I can't even use it. 

Has the doctor suggested glasses with a silicone seal?  Maybe you need to be the proactive one and bring up the ideas everyone mentioned to your doctor. 

It annoys me that research time and money is used on facial hair growth and insuffient eyelash problems.   C'mon, get some mascara and a tweezers people.  Here we are in daily pain and potentially at risk for serious infections and nothing is on the horizon for us. Well, that's not exactly true.  There is a researcher looking into stem cells and regrowing the glands.   http://tuftsjournal.tufts.edu/archives/24/not-a-dry-eye

[Fairykissez]

Crymeariver, why can't you use restasis?

[Crymeariver]

The docs are concerned because Restasis is a immune modifying drug and I have lacrimal gland lymphoma from the Sjogrens.  No one knows what it would do.  Just better not to mess with it.

[Fairykissez]

Oh wow I didn't know sjogrens could do that. I'm sorry you have to suffer without anything to help. What are they doing to treat that if you don't mind sharing?

[gold55]

Fairykissez,
I am so sorry that your eyes are feeling bad.  It sounds like you may want to search for a new MD Ophtho!  Has your doctor mentioned 'serum tears' to try?  That's your own blood mixed at a compounding pharmacy....we prescribe them to SJS people all the time.  I'm the one that's mentioned taking BioTears Gelcaps for the past three months.  I can definitely say I've noticed a difference in my mouth dryness/saliva production.  The pills have all the vitamins plus black currant seed oil, cod liver oil, aloe vera oil and tumeric (anti-inflammatory).  I take them with my regular Omega 3's and sea buckthorn caps.  I did extremely well over the winter months but now it's getting very hot out here in AZ and DRY....oh so DRY in AZ so I'm going to increase my BioTears Gelcaps by one and start using drops more regularly.  For me, the heat wears on my joints and my dry eyes more than the cool weather!  Wishing you well and I hope you can see some results soon.  In our practice we know that Restasis isn't the answer for everyone, especially SJS people.  We see  more improvement with Lupus patients on Restasis.     

[eye2dry]

I tried Restasis last year for 4 months and it never helped me with making more/any tears.

eye2dry

[gold55]

I have heard that the Salagen or Evoxac can help with the eyes as well as the mouth.  Are you on either saliva stimulant? 

[Crymeariver]

I had Rituxan (a chemo like infusion) this time last year but only got partial remission and the lymphoma started growing again.  My eye doc would like to try an experimental injection of chemo into my lacrimal glands IF the procedure is approved.  I have a second biopsy this Friday and hope to start treatment soon.  I'm ready to poke out my eyeballs too!

As my doctor explained it, lymphproliferation is a continuum with Sjogren's on the benign end and lymphoma on the malignant end.  Everyone with Sjogren's has some degree of lymphproliferation in their lacrimal and salivary glands.  Very, very few ever cross over to malignant.  But there is that small risk. 
 

[Fairykissez]

Crymeariver, this sounds very painful. Did you have pain and that's how they found it or did they find it on an eye exam? Rituxan is one of the big guns I'm surprised it didn't work.

Gold, no I'm not on anything to produce saliva, I'm gonna talk to my rhumey about it at my next appointment. I was fine until they tapered my prednisone. I'm finally down to 5mgs from 60mg this past year has been rough for me. I had pericarditis twice, then pancreatitis. I hate prednisone it made me gain 80lbs but I don't know if I can come completely off of it. I'm misreible on such a small dose.

[jodie]

Is this an opthamologist?  Did he do the rose bengal test?  Did he examine you for blepharitis?  Have you discussed the drops to use that may work for you?