I’m trying to figure out if it’s the Remicade causing this pain behind my left eye. I have had uveitis in the past but I do not have it now and every time I’m on a biologic I seem to get this terrible pain behind my left eye with swollen eyelids.
I went off the Remicade for a few months and that pain was much more infrequent but the rest of my inflammation went haywire. I’m going back on it.
Has this happened to anyone else? And if so what did you do about it?
Thanks!!!
Walter’s Mom, I have nothing to contribute to this except to say that I’d be on the phone to my ophthalmologist pdq. I’m simply not prepared to take a “wait and see” approach where my eyes are concerned. (Sorry, couldn’t resist that one.)
MacMac, though, might have some words of wisdom for you.
I must know: is Walter your avatar? Let’s hear about him, he looks like an interesting pooch. 
Not much wisdom but a little experience … I am not on biologics yet but currently my rheumy is exploring whether I have temporal arteritis which is also called giant cell arteritis. Basically I understand this to be vasculitis an inflammation in some blood vessels in the head. Usually more regular for women over 50 but nobody told my 49 year old self.
Symptoms can include pressure behind one or both eyes. A weird headache often in the temple on one or both sides and a tender scalp. I dont want to be alarmist but I completely agree with @Seenie. If you think something is wrong best to see a doc quickly. There are a few reasons to pay attention including you can go blind and some biologics are better than others for the condition. I am on daily steriods until we get the results. Hopefully you will find out all is good but consider getting it checked. I dont think i have it but don’t want to mess with my eyesight. Hope this is helpful. Sorry to be so long winded 
This is interesting. I have pain in my left eye and my eyelid droops–I have to consciously open it, but it no longer matches my right eye. It also waters and my vision gets blurry as the day wears on. I was thinking it’s a lazy eye, but it’s really weird it used to be my dominant eye.
I have a routine eye appointment scheduled for late June and I was planning on telling the eye doctor about it then. Now, after reading this thread, I’m wondering if I should try to get in sooner because of this issue. I didn’t realize biologics could cause eye problems that could lead to blindness.
I should also mention I get weird hard and sharp pains inside my head–in several places, along with pain at the front of and behind my left eye, plus sensitive scalp occasionally. Oh, and there’s the constant loud ringing in my ears! Are these things to be concerned about?
Yes Grandma J. Yes. Please go get them checked out.
Hi @Grandma_J I get all those symptoms and that’s why the doc checked for arteritis. I am not sure about you but I have found them a bit worrying but mostly assumed they were because of my ears that have been ringing and popping alot. I had the symptoms for a year before I said anything. It was by accident when I started steriods for the pain in my joints that I noticed my head improved. My MRA which is an MRI that images the blood vessels as I understand it, shows I don’t have it but I am still glad I got it checked. I think if you can get it checked it’s good to rule out Sometimes I worry that to have all these tests is over reacting … i used to worry if they didn’t find anything then that would be bad like they would think I was over-reacting. Then a friend said to me…“you know your worst fear is your best outcome”, and I thought that I had never heard a truer thing. My worse fear meant the test would be clear… Well I hope you are kinda getting what I am saying.
Doc not sure yet what is going on, but what I have noticed is my my head pains also in strange places, often down the bone ridges in my scalp, and watery droopy right eye are often worse when other symptoms are worse. I currently have three theories. 1. Extremely bad sinus but behind my ears, 2. connective tissue inflammation (consistent with other parts of body) or 3. just weird headaches. Re the biologics…rheumy said some biologics better than others.
Sorry I have gone on a bit. Guess I am trying to say it’s a good plan to check it out and hopefully rule it out. Best wishes. M
Yes Garndma J, get it checked today. Highly unlikely it’s Arteritis, buts it’s a nasty beast that needs to be treated quickly if it rears its ugly head.
Like MacMac, I had very similar symptoms (with the addition of vertigo and a one-sided optical migraine - never had one before) and went to see my GP. They had both a blood test and optometrists appt done in about 4 hours. Nothing to see here!
Thank you, Poo_therapy, MacMac and Jen…my mom, who doesn’t have psoriatic arthritis, also has the pains in her head and she did have polymyalgia several years ago and has been on low dose prednisone ever since. She had asked her doctor about it and they didn’t even seem to think she needed tests.
When looking up info about arteritis, I also read on uveitis, which, if I have it, I don’t think it’s severe because the pictures shown were of extremely red and blood-shot eyes. My eye isn’t that red at all…I’m still going to have it checked–just don’t know if I should be seen sooner than my routine yearly appointment which is in about a month…this thing has been going on a long time with this eye. I had asked a different eye doctor about it last year in my June 2016 exam and he said there was nothing wrong. I beg to differ, though, because it just doesn’t feel right! I’ve got a new doctor lined up for this year’s appointment, and I think she’ll be very thorough.
Did you ever Google psoriasis or psoriatic arthritis on Google images?.. the top images are the worst possible cases… Not to worry you! But Google isn’t always the best to compare to…
Hey @Jen75, did you every find out what was causing it or what you could do to help ease the symptoms?
Hi MacMac, unfortunately, nope.
I’ve had a pretty big constellation of symptoms though, many of which are additional to those listed above, so it’s a bit hard to say if they are a similar issue (commencing with severe, arthritis-unrelated fatigue, BPPV - benign positional vertigo - tinnitus, extreme ear pain, fullness and crawling sensation in ear, TMD, severe but transient headaches, one sided optical migraine, low grade fevers, and night sweats, then I had a remission, then relapsing to chronic headaches, apparent poor sleep quality with severe fatigue and daytime sleepiness, night sweats again, the shakes, balance and coordination issues, raised intra ocular pressure, transient blurry vision and, of all things, constipation - I haven’t had that since I was 16 - usually have IBD associated diarrhea when I’m sick).
Like you, I even had a brain MRI (actually after they ruled out arteritis).
I’ve been diagnosed with mild sleep apnea, but obviously that doesn’t explain half of it.
My Rheumy thinks it’s nerve related (and whilst you have all gathered I don’t like his personality, so far he’s been annoyingly right on the diagnostics).
My Physio has also suggested nerve related - of the trigeminal nerve - possibly some sort of indirect effect of joint / tendon inflammation affecting the trigeminal nerve.
I guess they’ve ruled out most dangerous things, so, until it presents more clearly, when I need to be on my game, I take steroids (as they seem effective - only the fatigue is somewhat refractory and can require 25mg a day to knock it on the head).
I have an extra complication in that I have MGUS bordering on smouldering myeloma (amazing how we, and the medical leofesdion, ‘use’ the definitions to our needs at the time!) and the Rheumy had also suggested that as I seem to be very ‘sensitive’ to my body’s situation, even though I have no blood results that indicate I should have symptoms, perhaps I’m receiving early danger signs.
Sigh.
But it does give you perspective on things! I’m spending the inheritance WITH my daughter, while she’s still young 
That was a very long post, didn’t mean to distract or hijack, just to say that whilst I haven’t found an explanation for my symptoms, they are indeed a bit weird, so you might indeed find one for yours.
Hat’s off to you, Jen. Your daughter is a lucky girl.
Next holiday; Fiji! A request from the little girl, happily fulfilled! 
Thanks @Jen75. Wow you have got a lot going on right now. I hope things start looking up…Fiji will help. I think my problems are also nerve related and possibly connective tissue related. Though possibly not the nerve you are talking about.
It seems to be worse when my neck is sore. Steriods help so there is some sort of inflammatory process and I get less facial pain on endep.
Love, just love your attitude to what seems like to me just far too many truly unpleasant issues. Fabulous Jen75. You must tell us all about Fiji - how wonderful.
MacMac, I did have a 5 week neck flare earlier in the year and the headaches, scalp sensitivity, and ear pain were very intense (even with intermittent steroids). I also got weird sudden onset (quite severe) depression that literally disappeared the same day my neck suddenly resolved. Sometimes for me, giving it a good whack of steroids (like 5 days at 25mg) can break the cycle and seems to ‘switch’ the flare off. It’s a bit drastic, but neck and spine arthritis is really something else - if you can’t seem to break out of the cycle, it may be an option worth discussing with your Rheumy?
Thanks Poo - I sure will! I am so looking forward to it (but have to wait till September). I’d better learn how to use the site and see if I can post some photos!
Thanks Seenie, I reckon I’m pretty lucky too
I always think having booked the holiday, then looking forward to it is almost as good as the holiday! So you’re going to have a happy summer looking forward to it. Aren’t you? Bliss.