Pa in the eye

I have been told by my derm that I have pa in my left eye, the lashes fall out and stay crusty, my eye stays red and irritated, feels like sand in it, I have an appointment with an eye specialist the 26th this month and am really scared my vision is really blurry and diminished in this eye I have already tested positive one time for glaucoma, and after medication not positive but that eye Dr had never heard of pa in the eye. I have been diagnosed with PA, PAA, Osteoporosis, and Fibromyalgia, by my Rhem, he has started me on Leflunomide and I take Acitretin but I have seen no improvement, he is making me take all of the preventative shots, flue, pneumonia, tetanus, and shingles because I think he is going to start a biologic I just want the pain and sleepless nights to go away, any suggestins appreciated

I am so sorry you are having such a difficult time. Sounds like you get more bad news every time you go to the doc...so many of us do. A biologic is actually a really positive thing. So many people have had such a great experience with biologics. Remember, though, that one person's experience does not necessarily mean you will have the same. Each person's body is different and reacts differently with different meds. Most importantly, don't hesitate to ask your doctor any questions you might have - even if it means you call the office to ask the nurse a question. Some folks have trouble with self-injections, but both Humira and Enbrel have sure-shot pens (that isn't really the name, but I can't think of the word I'm looking for right at the moment), which makes self-injecting kind of a no-brainer, which in my case is a REALLY good thing, since my brain doesn't always work like it should :)

As for the sleeplessness, I wish I could give you a magic answer. I'm sure there are a lot of people a lot smarter than me on here who might be able to give you a good answer. I finally asked my doctor for a prescription for insomnia because it was getting so bad. I'm now taking a med that is used to treat depression, but has the nifty side-benefits of helping with insomnia and with nerve pain...I still don't sleep nearly as much as I'd like, but it has gotten better. I guess my best advice is to stop drinking anything with caffeine by 6 pm, try drinking chamomile tea right before bedtime (Celestial Seasonings makes a tea called Sleepy Time which has ginseng and chamomile). Spray your bed linens with lavender, and take a hot shower with a lavender scented body wash right before you go to bed. Play classical music really quietly by your bedside unless classical music makes you hinky, or listen to a book on cd so low you have to really concentrate to hear it - that will help you shut off your brain from all your daily worries and concerns. There is a CD called Baroque at Bathtime (http://www.amazon.com/Baroque-Bathtime-Relaxing-Serenade-Cares/dp/B0000041DS) that works pretty well for me when it doesn't irritate my husband. All basic suggestions, but basic is sometimes better than complicated. Good luck, and please keep us updated so we know how you are doing.

Great suggestions on the insomnia…You are right, sometimes the simple suggestions are overlooked. I have meds to help with sleep, but hesitate taking them, as I am so medicated to begin with, and exhausted enough, it seems, to sleep much more than my share. Unfortunately, my brain refuses to recognize it…hope you all have sweet dreams tonight!



tmbrwolf329 said:

I am so sorry you are having such a difficult time. Sounds like you get more bad news every time you go to the doc…so many of us do. A biologic is actually a really positive thing. So many people have had such a great experience with biologics. Remember, though, that one person’s experience does not necessarily mean you will have the same. Each person’s body is different and reacts differently with different meds. Most importantly, don’t hesitate to ask your doctor any questions you might have - even if it means you call the office to ask the nurse a question. Some folks have trouble with self-injections, but both Humira and Enbrel have sure-shot pens (that isn’t really the name, but I can’t think of the word I’m looking for right at the moment), which makes self-injecting kind of a no-brainer, which in my case is a REALLY good thing, since my brain doesn’t always work like it should :slight_smile:

As for the sleeplessness, I wish I could give you a magic answer. I’m sure there are a lot of people a lot smarter than me on here who might be able to give you a good answer. I finally asked my doctor for a prescription for insomnia because it was getting so bad. I’m now taking a med that is used to treat depression, but has the nifty side-benefits of helping with insomnia and with nerve pain…I still don’t sleep nearly as much as I’d like, but it has gotten better. I guess my best advice is to stop drinking anything with caffeine by 6 pm, try drinking chamomile tea right before bedtime (Celestial Seasonings makes a tea called Sleepy Time which has ginseng and chamomile). Spray your bed linens with lavender, and take a hot shower with a lavender scented body wash right before you go to bed. Play classical music really quietly by your bedside unless classical music makes you hinky, or listen to a book on cd so low you have to really concentrate to hear it - that will help you shut off your brain from all your daily worries and concerns. There is a CD called Baroque at Bathtime (http://www.amazon.com/Baroque-Bathtime-Relaxing-Serenade-Cares/dp/B…) that works pretty well for me when it doesn’t irritate my husband. All basic suggestions, but basic is sometimes better than complicated. Good luck, and please keep us updated so we know how you are doing.

I am on Enbrel for pa ans PsA, my dr, told me no live vaccines. Had flu and Pune,onia shots in fall but I believe the shingles is a live vaccine so if your immune compromised it is a NoNo. ask around and always get 2nd opinion or move on if dr.is not listening. I believe that pa can affect eye, iris can becom inflamed. Check it out with good dr. And let us know how you do.

Sorry to hear you’re so poorly with other probs in top of PsA! It does have links to skin, hair, nails and eyes! My nails are dreadful, toenails thick and pull off nail bed but finger nails are thin, soft and snap off right down past the quick! So sore! Hope you get eye condition sorted ASAP x

Jbird don’t delay on the eye issue as psoriasis of eye can cause loss of vision. I’ve read, along with DMARD medications and Biologics some take steroid droops. I’d print some information on Uveitis and take it to the eye dr with me so he knows what to look for on eye exam as him saying he’d never heard of Psoriasis of the eye is kinda scary. Keep us posted on your eye exam findings and best wishes to you.

I would try to bump up your eye doc appt if you can. Not trying to add to your worries, but uveitis/iritis is something that needs to be dealt with quickly. Not dealt with, it can damage the eye, in time, even possibly causing blindness. Most of the time you’ll have to go on a round of steroid drops and other drops that temporarily paralyze the iris to clear it up. Even the act of blinking irritates the eye.

I’m on a standing order with my eye doc, and can be sitting in his chair within 24 hours of a flare up, if I call.

I really, really appreciate everyones input and I am going to print some info on uveitis I am really worried with my eye problems, my Rhem told me that I have no immune system after about a hundred blood tests that is why he is giving me all the precautionary injections I just hope it works, I go back to him later this month then he will decide what our next move will be, my pa has gotten worse so I guess I need to go back to the derm, but I really hate all these meds but with all this I guess meds are going to be in my future. life sucks sometimes, I already had three back surgeries that left me with sciatica pain down my left side, this I had learned to live with but the PAA has brought me to my knees literally, I fall and stagger like a drunk my hip hurts so bad I want to scream so is life thanks for being here

We are walking in the same foot steps, I am schedule for my third back surgery in a few days to repair a disc. I have eye issues as well,

Back issue with PsA can be a problem but it is life as I know it. Some people think that I am worse off then most but I look at all the other issues that others are having and I don't mind having PsA.

I hope you find a simple solution because I know that it can be overwhelming. Keep a smile on your face and keep your fingers out of your eyes and life will look better.

Sorry to hear that you're having a hard time. Just wanted to chime in on uveitis/iritis. It really is very important to get to an eye doctor right away. Please do try to bump the appointment by telling them you're concerned that it's uveitis because you have PA.

Like grooveh, we have a standing order from my daughter's eye doctor to come right in if she flares up. If we're not in same day, it's always the next day. It's that important.

Everyone is different, but remicade was the solution for my daughter. Our rheumy and eye doctor both told us that some biologics are not effective on uveitis. You'll want to do your own research and consult with your doctors, of course.

Best wishes finding what works for you. Let us know how you do!

I'm sorry about your eye problem, but I was so glad to see someone post something about eyes. My PsA symptoms are only in my knees, which swell and feel like it's been smashed with a hammer everyday, never had skin psoriasis. Oh yeah and I have extreme fatigue. About 8 months ago my left eye began tearing excessively and turned red as if I had "pink eye". But there was absolutely no pain, burning or itching, just red and dripping constantly. The 1st eye doctor diagnosed me with allergies, even though it was only my left eye and no itching. The 2nd eye doctor said it was from dry eye syndrome. Again, only in 1 eye? Finally a 3rd doc said it was neither of those and that it appeared to be chronic inflammation without any bacterial infection. He felt the PsA could be showing up in that eye since I had previously had a slight cold before it started and that it kicked up my immune reaction in that area. He took a needle and opened up the tear ducts and gave me steroid eye drops. Within a few weeks it was back to normal. But now from time to time I get tears dripping out for weeks at a time and have to use the steroid drops. It so annoying. Has anyone else had this problem? I've searched discussions and websites and can't find any mention of it. Just the uveitis/iritis. I am so tired of weird things showing up in my body and having to guess if it's from PsA or something else. PsA symptoms seem so random from person to person. Ughhh!

I feel for you my PsA is in my knees, and left hi and now my ankles are starting it seems like I e pain is so bad can't win the pain is so bad today I just want to scream oh well Monday I see my Rhem and the 26th the eye specialist maybe I will get some relief hope you do to

Eye issues are always serious because you only get two of them, and once they are damaged, you live with that damage forever. BUT...leave it to tmbrwolf to cheer everyone up with a funny story:

I woke up one Sunday morning about a year ago with my left eye on fire. Not literally, of course, but it sure felt like it. It was tearing up constantly, hurt like you wouldn't believe, and was as red as I've ever seen an eye get. Itched like crazy too. Not to mention the lovely "eye goobers" that dried and cemented my upper and lower eyelashes together. All in all it was a terrible day. I had read that PsA can make a person extremely susceptible to pink eye. And pink eye is nasty and damaging...and doggone it...I was in PAIN! I was absolutely sure that was what I had...so I called my doctor's answering service to ask them what I should do seeing as it was a weekend and I was in misery. They told me that if I was in that much pain I needed to go to the E.R. immediately to get it sorted out, and that it absolutely couldn't wait until the next day when they were open...so off I went. To the E.R. For my eye. <shakes head in disgust> 4 hours later and $700 poorer, the E.R. doc picked up a pair of tweezers and a huge lighted magnifying glass and removed...(wait for it...) an eyelash. Apparently one of my eyelashes decided to grow down instead of up and it was sticking in my Iris. Wow was that embarrassing! Luckily the doc took pity on me and put on the papers "removal of foreign object from eye." Snort. The moral of this story is...PsA is a terrible disease that shows up in horrible and unexpected ways and places and causes a ridiculous amount of permanent damage and should be eradicated from the face of the earth. But sometimes and eyelash is just an eyelash. Hope this made today a little better.

I wish Drs would take us seriously because we know what is going on with our bodies and we know when somethingis wrong my eye scares the s--- out of me but I am forced to wait this has already been going on for way to long I have lost sight not completely but a lot in my eye I tested positive once for glaucoma and then not my pressure came down but I was also on drops to relieve the pressure I have seen two different eye Drs and they had no idea of how to proceed with care makes you wonder why they went to school but for now I wait for the 26th with fingers crossed blurry vision, red eye and of course no lashes lovely look and the burning and itching is at times ridicules but so goes life with Ps PsA and all these other new and debilitating crappy things that are attacking my body, it could be worse, my head could fall off Ha Ha hope all is better today and I pray each and every day for a cure Loving my new friends here

Mom of Child Living with PsA said:

Sorry to hear that you're having a hard time. Just wanted to chime in on uveitis/iritis. It really is very important to get to an eye doctor right away. Please do try to bump the appointment by telling them you're concerned that it's uveitis because you have PA.

Like grooveh, we have a standing order from my daughter's eye doctor to come right in if she flares up. If we're not in same day, it's always the next day. It's that important.

Everyone is different, but remicade was the solution for my daughter. Our rheumy and eye doctor both told us that some biologics are not effective on uveitis. You'll want to do your own research and consult with your doctors, of course.

Best wishes finding what works for you. Let us know how you do!

Info on Eye manifestations of PsA

http://www.psoriasis.org/files/pdfs/forum/Psoriatic-Eye-Manifestations-Forum_Fall_11_WEB.pdf

I had surgery to my upper eyelids 4yrs ago, they were drooping into my vision. I was diagnosed with PsA following year. I have had sharp pains indie or the back of my eyes off and on for 2 yrs now, just flashes of pain and watering. Also notice sometimes with makeup on my eyes water-onto the eyelid , upwards. Really weird. I have mentioned eye pain and gotten blank look from rheumy. It seems everyday there is a new area, as I write this Achilles tendons feel tight and strained.
My son had uveitis with his colitis (same gene as PsA). It was obviously swollen and RED. No doubt about it and painful too. Can’t tell you how guilty I feel that his ulcerative colitis is from my gene pool, I had no idea. He has arthritis issues now too from this. Time some scientist got interested in helping find a treatment or cure.

Ugh, I have been having eye problems for a couple of years now. My eye doc gave me steroid ointment and said it's probably allergies...

So I do walk around fairly frequently looking like a vampire with my red eyes and swollen lids. When they get bad is seems like I am more likely to have that stray eye lash get stuck, but I think it is because of the swelling. They just get twisted up. I keep eye wash in the medicine cabinet and always search for that 'foreign object' when the eyes are inflamed. It adds insult to injury, but isn't the cause of the inflammation.



tmbrwolf329 said:

Eye issues are always serious because you only get two of them, and once they are damaged, you live with that damage forever. BUT...leave it to tmbrwolf to cheer everyone up with a funny story:

I woke up one Sunday morning about a year ago with my left eye on fire. Not literally, of course, but it sure felt like it. It was tearing up constantly, hurt like you wouldn't believe, and was as red as I've ever seen an eye get. Itched like crazy too. Not to mention the lovely "eye goobers" that dried and cemented my upper and lower eyelashes together. All in all it was a terrible day. I had read that PsA can make a person extremely susceptible to pink eye. And pink eye is nasty and damaging...and doggone it...I was in PAIN! I was absolutely sure that was what I had...so I called my doctor's answering service to ask them what I should do seeing as it was a weekend and I was in misery. They told me that if I was in that much pain I needed to go to the E.R. immediately to get it sorted out, and that it absolutely couldn't wait until the next day when they were open...so off I went. To the E.R. For my eye. <shakes head in disgust> 4 hours later and $700 poorer, the E.R. doc picked up a pair of tweezers and a huge lighted magnifying glass and removed...(wait for it...) an eyelash. Apparently one of my eyelashes decided to grow down instead of up and it was sticking in my Iris. Wow was that embarrassing! Luckily the doc took pity on me and put on the papers "removal of foreign object from eye." Snort. The moral of this story is...PsA is a terrible disease that shows up in horrible and unexpected ways and places and causes a ridiculous amount of permanent damage and should be eradicated from the face of the earth. But sometimes and eyelash is just an eyelash. Hope this made today a little better.