Newbie w/ Cornea specialist results

[achyeyes]

Hi all

I poked in at the forum several months ago, back when I'd know I'd had Sjorgren's since at least last January (I really should've written since, there's been so much going on healthwise, I apologize.)

At first, the nurse was more than a little skeptical when I told her I had a lot of autoimmune diseases, until I started counting the 8-10 comorbid conditions off. Eye pressure was tested, normal. Then eyes very basically checked with glasses on (i.e. the read the letter test.) Then eyes, still numbed from the glaucoma testing were dialated for when the dr. came in. He took a very careful look and then dyed them with orange dye. Also, at some point in the process really stinging drops were put in, then strips of paper laid just under my eyelashes/lids. Results: Almost no tears whatsoever--Restasis samples and Rx given, urged to have all 4 punctal plugs put in a.s.a.p. There's damage to the left eye's lens and retina, but it'll take a Retinal specialist to go further, even with the plugs, and definitely no new eyeglasses for the next 3-6 months. I just have to get the Retina guy's referral to see him a.s.a.p.

In brief--life's very painful (more so, parts of the day, than the mod-severe RA)--my eyes, eyelids, it feels like my brain even hurts. Extremely photophobic, it's past midnight and I'm still sitting in a darkened room (but at least I'm not wearing sunglasses--eye dialating glasses under my Rx glasses--tonight. All errands, when possible, are run at night (lights look like they're a bunch of extra long cat's whiskers at night.) If the sun's behind the car, I put the rearview mirror on the night function. If I *have* to leave the house during the day, it's *all* eye dialating sunglasses. So, lots and tons of headaches and the last 5-6 bottom lashes on the "damaged eye" have begun to turn in and at odd angles. I'm in the routine of an Optive drop per eye 5 min. before the Restasis drops (twice daily) followed by another moisturizing drop (I think tomorrow I'm going to buy ointment for sleeping.) I'm going to buy a pair of the Tranquileyez (sp?) (esp. as I already have my bedroom *really* blacked out...it's so pretty of a room to be blacked out, too and as my first dose of medicines in the morning usually work so well (or it could be dropping the iron treatments for now, too) knock me out for a 3-5 hr nap daily.

I thank you for listening, lol, and guess the big questions would be:
I wear Rx glasses, they're out of date plus the Sjorgren's+ troubles make it *really* hard to see (I can't read a road sign unless it's big and I'm right up on it)...but I'd really like to find some *very extra dark* sunglasses(?) (likely fit-over-Rx glasses) that hopefully don't look like ski goggles. Any suggestions as to where to find them? Something feminine, if they exist? I'm *so* glad there are options for when I can get a new Rx, but that's some time off. (giving up reading for the last several months has been hard...) And if something *does* exist, is there anything moisture-containing? The Cornea specialist says such glasses are good, like "greenhouses" for your eyes, but not enough for mine (seriously, *no* tears at all,) still, I need something to try. I guess I'm just trying to try to figure out how to keep it all moist and dark...Also, how does Sjorgren's damage the lens and retina? And maybe most critical of all: Any kind of invasive proceedure (even a blood draw, but *definitely* anything more than that--the bone marrow biopsy was hell, I could'nt sleep but for a couple hours at a go for two weeks,) causes horrible autoimmune flares and I'm afraid that if canal punctal plugs are put in (I've been told they'd be silicone, non-rigid, but they're not the bathtub-stopper kind,) he won't be able to get them out, so my eyes will get damaged so much worse. I just can't take the aditional pain, but I know the dr's right, I likely need some kind of plugs. Oh, and my eyelashes are falling out a bit faster than usual. The only other big concern, the rheumatologist wants me to consider going on Enbrel (he knows about the eyes and severe, autoimmune complicated anemia...I think that's why he skipped methotrexate all together)---what would all this eye stuff be like with Enbrel (and possible infections?)

I have to go put in all the eyedrops as we speak Thank you so much for any advise and mentoring you might be able to offer. Also, any additional products you might be able to suggest would be wonderful.

Thanks!
Achyeyes

[calli66]

I also have Sjogren's and dry eyes the worst symptom. From your description, it sounds like you might have Blepharitis---the lashes falling out and getting turned and scratching the eye. Are you being treated for that?

Not all your troublesome symptoms, like the extreme photophobia and the lashes, etc. are a direct result of the dryness. So even if you were to wear the most air-tight darkest fit-overs, you would likely get only modest relief. Btw, I am not aware of any good-looking styles of fit-overs that would give the kind of protection you're looking for. I wear a simple fit-over Solar Shield from Walgreen's whenever I go outside and it works well for me.

If the cornea is not moist, then it gets a "roughened" surface--the tissue is not healthy, leaves it open to infection, and your vision is compromised. Plus, it's very painful. Little bits of tissue can adhere to the lids and tear away (you've probably read about that here). When it's "rough" it holds moisture unevenly (some parts dry, some parts edema), and that's one reason why your vision is poor. My vision was crap for about 2 years before my eyes got more stable. Still for me, it's a struggle to get the prescription right, and I don't see well enough to drive at night.

Please be aware that Restasis doesn't work for everybody. It didn't work for me, and in fact, caused my eyes to become more dry and sensitive. The worst Blepharitis I had was while I was using Restasis.

The Retina. I don't know how Sjogren's or RA affects the retina. I have early macular degeneration myself, and a thinned macula due to high myopia. Try to get more information about this from your doctor if you can.

Plugs and Sjogrens. Some doctors believe that the plugs can trap the inflammatory factors and debris in the eye and actually make the eyes worse. Several of my eye doctors have told me this within the last couple of years---and so they support my own decision not to use plugs for now. Some people I know with Sjogren's do OK with the lowers plugged, though.

I have gotten almost total relief since I started the "eye spa" treatment with warm compresses and lid massage with Q-tips. Have you tried that?

Using TranquilEyes and Genteal Gel at night. This improved my comfort immensely---I can't praise it enough. Two thumbs up!

Enbrel. A friend of mine with Juvenile RA has had good results with this. She is a professional dancer, and has been able to lead a normal life with this medication, but worries about the long-term effects. It's a Heavy-Hitter drug, from what I understand.

Plaquenil. Have they prescribed this for you yet? It is one of the first and most reliable drugs given for auto-immune conditions, Lupus, Sjogren's and RA.

Here's my take:

1. Question whether Restasis is doing you any good. Try to remember what your eyes felt like before you started it, and maybe try a few days without it just as an experiement.

2. Use a gel and TranquilEyes at night.

3. Start the Eye Spa treatment.

4. Ask your doctor if you have lid involvement (bleph). and make him answer your questions about the photophobia and the retina.

Keep in touch, and I hope you'll get some relief soon.

Calli

[achyeyes]

Hi Calli66,

Thanks so much for writing! Wow! There's so much for me to learn...

Like "Eye Spa"--I've just been searching the site and forum and I must just be missing it...is it as relaxing as it sounds, lol? I'm anxious to try it though. I have to try it...at least the warm compresses shouldn't be too hard to figure out

I just got Genteal Gel Preservative-free drops tonight---*big* difference in drops! Optive felt just watery, too watery. Blink felt almost dry. Systane (?) were definitely more moist than the other two, but Genteal feels *replenishing.* If I could take my eyes out and soak them for a few hours that would be amazing. The only weird (mildly disturbing?) thing I'm noticing? I can feel the drops as I put them on the surface of my *right* eye, but I can't really feel anything (aside from the ever-present pain) in/on my left eye. For instance, I'll go to put drops in (and I've been putting them in lying down) and drip, a few blinks, and my right eye feels more moist, but I can't feel anything dripping/touching down on my left eye, so (having bad hands from the RA, too, and decreased sensitivity) I try squeezing the bottle, etc. again, only to eventually find my left eye has liquid pouring from it, only it still hurts and it still feels dry and scratchy. So I guess now I'll stand up, look in a mirror and, creating a pocket with my bottom lid, treat each eye one at a time--actually seeing them going in.

I've been dealing with my skin pealing off in onion-thin, raw sheets for years now (stamp to gum stick size pieces in my mouth, spots the size of my fist rubbing or shearing off my chest and a combo of the first two situations plus tearing to the point of bleeding and my body produces a harsh "basic" (vs acidic) secreation of pure searing pain (doctors in this last region have called it "history" and severely nerve damaged, completely unfixable, untreatable.) I just never would've thought about anything like that going to my eyes. But you're right, it has to be possible. (My Pcp's lousy re: referrals, taking months, so I'm going to check with my insurance to double-check and see if the cornea dr. can make the referral directly and quickly.)

What you mention about infection, I guess with so much going on I hadn't considered eye infections, but thinking about going on Enbrel, well, it sounds like a plan for the eyes has to be in place beforehand. I've been on 3 courses of Plaquenil to no success (it ended up making me very, very sick, worsening the ulcer and making it unable for me to eat.) The rheumy wanted to try Methotrexate, but I think at this last appt. (he's been the one who's tested for all of these oddball-seeming diagnoses--Sjorgrens, Severe Anemia, etc.--when the PCP and other specialists thought he, both of we, were nuts...but he was right) he was seeing all of these things come together in an atypical presentation, but definitely an immune system going very haywire. Hence, the Enbrel. Truth, the black box warning's a bit worrisome. I had a friend who slipped into a coma in less than 24 hrs while on Orencia + MXT. The last time I saw her she tried playing it off the cuff, but made it *very* clear that she'd take care of things before anything like that ever happened again. I don't want to go to a dark place like that (as well as the severe iron allergy, the reason I've had to stop taking the I.V. iron treatments, hopefully to be replaced, hopefully without any problems, by Procrit.) But a part of me equally as big is *so completely* overwhelmed by so much pain from autoimmunes (incl. what's likely something new called S.I., another offshoot of RA) that my life has pretty much shut down and so the idea of taking something like Enbrel that would just knock out the pain and slow all of this down, it wouldn't even have to give me a lot of ability back, if it worked (and since it would bypass my GI system) I might get a little peace. I know the relapse is absolute, pure, unremitting hell--I've heard about those first hand, they break people. Those I worry about.

(Being so anemic and not taking treatment just now is...different. The I.V.s made me sick 5-6 days out of 7, then the reactions and pain were cumulative. Five weeks worth, plus the bone marrow biopsy and tons of bloodwork nearly killed me. It was too, too close. So, for now I'm *very* sleepy--I sleep, wake from unbearable pain, take my medicines, put in the eye drops regimine, then fall back to sleep hard for another 4-6 hrs. But at least the time when I am awake, so long as I'm not in immense pain, is more normal. The only other side effect of being off the iron, a little strange, I just blank out on things like words, common words, often for things I'm in the process of doing, and just stay blanked out for minutes/hrs until somone mentions the word. So, it's a relative kind of normal, lol, a better quality of life, but it still needs a lot of improvement)

So with all those things considered, I'm definitely carrying your words with me to the next eye dr., without a doubt, "Plugs and Sjogrens. Some doctors believe that the plugs can trap the inflammatory factors and debris in the eye and actually make the eyes worse. Several of my eye doctors have told me this within the last couple of years---and so they support my own decision not to use plugs for now. Some people I know with Sjogren's do OK with the lowers plugged, though."

I'll keep a symptom log to see how the Restasis is doing (it's only been a week so far,) I'm just hoping for help from anywhere. The tranquileyes are getting ordered this week.

The words "normal life" in your friend's life sound ***SUBLIME!***...

So, how does the spa formula work, esp. w/ the lid massage?

It means a lot to know there's someone like yourself out there, Calli, and a real comfort to hear from you and learn from your wisdom. I only wish it hadn't come at such a price for you, for we all.

Thanks, looking forward to hearing back, too
achyeyes

[calli66]

The "eye spa" treatment is described in Dr. Robert Latkany's book "The Dry Eye Remedy" on pp 111-120. You can search the term here and also Latkany on line. Other doctors recommend the same basic treatment and call it different names like lid hygiene, massage, etc. But I like Latkany's book because there are good illustrations showing the technique. Now I use the rice baggy sold here at the Dry Eye Shop, but used a warm washcloth for a long time before that---the warmth is really relaxing--but can be a bit drying, too.

Have you tried the Genteal Gel yet (it''s in a tube, but is NOT the "PM" petrolatum product by GenTeal)? It's thicker than the drops and works well for me at night, when my eyes are driest. For me, getting the hydration at night really makes daytimes comfortable---I think that's when my eye surfaces heal.

Do you have any support groups for RA or Sjogren's in your city? I have found that this is a great place to trade information about local doctors, treatments, various medications, etc. Of course, everything's "anecdotal" but talking with others who face the same sort of health problems can give you the confidence to try new things. It makes the world less scary, I think. Are there any on-line forums for RA that you could join? I always think of the forums as being a source for "the inside story."

You're dealing with so much pain right now, that I can tell it's overwhelming for you. I didn't want to give the impression that Enbrel is a drug that will make your life normal. I don't know anything about it, and my friend who takes it is young and in good health otherwise. What I mean to say is: Everybody's different, and we react to meds in different ways. In the meantime, we have to figure out what works day-to-day. I know it's a struggle.

I have been looking into various sources for "integrative medicine" on-line recently, because I'm always thinking about why my immune does it's wacky thing to my body. So far, I've tried dietary changes---gluten-free, supplements, no coffee, no milk, etc.,---but I know there's more to it than that. Have you tried any of these "alternative" medicine approaches?

C