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Eyelid swelling everyday ... what's going on?!


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Old 08-31-2015, 02:33 PM   #1
1inamill
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Question Eyelid swelling everyday ... what's going on?!

Hi everybody, I've joined this forum in hope that somebody somewhere may be able to help me. I've been to 15 doctors in the past 4 months and so far none of them have helped in the least! Most of them have shrugged and admitted "I have no idea".
It "began" (as far as I noticed) with my left eyelid becoming severly swollen every single day in the late afternoon until I fall asleep at night. When I wake up in the morning it's seemingly fine, back to normal. This scenario happens every day, no matter where I am or what I do. The skin underneath my eyebrow or edge of my eye also crinkles at times. When the swelling gets particularly bad my eyelid begins to droop. Sometimes my right eye joins in on the inflammation fun, my it's always less pronounced than my left.
Besides that seems like my system has gone haywire lately: Very red eyes, swelling on my left cheek, left nostril, severe nasal congestion that develops throughout the day, photosensitivity, hyperpigmentation on face, white wheals on both cheecks, blocked parotid salivary glands (both sides), hives on right hand and inside elbows, allergic reactions to a variety of things (make me itch), weight loss.
Looking back, a few of these symptoms made a minor appearance a year ago, but they've been full-blown for close to 5 months now.
I've tried EVERYTHING! 4 Eye doctors, 2 allergists and extensive allergy testing, 4 dermatologists, neurologist, infectious disease doctor (she refused to even listen to me), 2 rheumatologists....
I've tried so many meds, ointments and vitamins I have a small pharmacy in my apartment!)
Only 1 doc- the big Prof. rheumy I went to (and paid big bucks for!) told me it's possible I have Sjogren's syndrome although my blood work doesn't precisely indicate it (positive on ANA multiplex testing, "low" positive for ana RNP and RNPa and APCA, though negative on ANA IFA, no inflammatory markers in tests, "borderline" EBV which used to be positive a few years back).
He's suggested trying Plaquenil but said it may take months to see improvement.
Has this helped anyone with facial swelling?
Anybody out there have other ideas or things that worked for them?
I look so hideous at this point I'm embarrassed to be seen and no longer even recognize myself in the mirror.
PLEASE HELP!

 
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Old 08-31-2015, 05:18 PM   #2
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Re: Eyelid swelling everyday...what's going on?!

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Originally Posted by 1inamill View Post
Hi everybody, I've joined this forum in hope that somebody somewhere may be able to help me. I've been to 15 doctors in the past 4 months and so far none of them have helped in the least! Most of them have shrugged and admitted "I have no idea".
It "began" (as far as I noticed) with my left eyelid becoming severly swollen every single day in the late afternoon until I fall asleep at night. When I wake up in the morning it's seemingly fine, back to normal. This scenario happens every day, no matter where I am or what I do. The skin underneath my eyebrow or edge of my eye also crinkles at times. When the swelling gets particularly bad my eyelid begins to droop. Sometimes my right eye joins in on the inflammation fun, my it's always less pronounced than my left.
Besides that seems like my system has gone haywire lately: Very red eyes, swelling on my left cheek, left nostril, severe nasal congestion that develops throughout the day, photosensitivity, hyperpigmentation on face, white wheals on both cheecks, blocked parotid salivary glands (both sides), hives on right hand and inside elbows, allergic reactions to a variety of things (make me itch), weight loss.
Looking back, a few of these symptoms made a minor appearance a year ago, but they've been full-blown for close to 5 months now.
I've tried EVERYTHING! 4 Eye doctors, 2 allergists and extensive allergy testing, 4 dermatologists, neurologist, infectious disease doctor (she refused to even listen to me), 2 rheumatologists....
I've tried so many meds, ointments and vitamins I have a small pharmacy in my apartment!)
Only 1 doc- the big Prof. rheumy I went to (and paid big bucks for!) told me it's possible I have Sjogren's syndrome although my blood work doesn't precisely indicate it (positive on ANA multiplex testing, "low" positive for ana RNP and RNPa and APCA, though negative on ANA IFA, no inflammatory markers in tests, "borderline" EBV which used to be positive a few years back).
He's suggested trying Plaquenil but said it may take months to see improvement.
Has this helped anyone with facial swelling?
Anybody out there have other ideas or things that worked for them?
I look so hideous at this point I'm embarrassed to be seen and no longer even recognize myself in the mirror.
PLEASE HELP!
You seem to have an autoimmune disease and I think a rheumatology Dr is the one to stick with. I must assume your kidney function has been checked, both the urine and blood tests, as eyelid swelling is generally considered either kidney or allergy related. There is a disorder of multiple chemical sensitivity that can coexist with autoimmune diseases that adds an additional layer of allergic reactions to the baseline autoimmune disease. These are confusing and complex and require treatment for both autoimmune and allergy conditions. Lupus can coexist with multiple chemical sensitivity and I would make sure all lupus testing has been done, with kidneys checked out thoroughly, and pursue intensive treatment for the allergic symptoms. This would include rx antihistamines both H1 &H2, avoidance of any known , and possible prednisone, which helps both allergic and autoimmune diseases. Prednisone can be used as a diagnostic challenge test as well as treatment. I hope you get the help you need, and in my experience, patients can direct testing and treatment by asking for it, after becoming knowledgeable themselves and advocating for themselves.

 
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Old 08-31-2015, 06:14 PM   #3
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Re: Eyelid swelling everyday...what's going on?!

Thanks so much for your response Ladybud!
My docs are pretty tough...haven't been able to convince them of much besides giving me more blood tests which they do with a sigh. My usual rheumy won't diagnose me with any autoimmune disease unless my blood tests absolutely confirm it.
I was given kidney blood and urine tests but I'm not certain I received all possible tests. I know creatinine and leucocytes were checked.I tested negative for all Lupus testing.I've tried a few antihistamines and not only did they not help they seemed to make matters worse, perhaps because they tend to cause dryness. I was offered a "steroid shot" by one doctor but was afraid to try it since I don't know how I might react to it and then I'd be stuck with the results for a few months.
Your recommendation interests me: Do you recommend Prednisone in oral pill form or injections? Besides perhaps having an immediate effect (or not...), what would be the advantage to taking Prednisone over Plaquenil in the long run? Could Prednisone help with all my symptoms including the swollen eyelid and bloodshot eyes?

 
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Old 09-01-2015, 09:37 AM   #4
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Re: Eyelid swelling everyday...what's going on?!

If you try steroids, I would try the pills for 2 reasons: you can adjust the dose easily, and you can try a short spurt with taper just to see if you respond without having the med in your system for 6-8 weeks like with an injection. I would not use Prednisone over Placquenil but consider trying it in addition. Prednisone has nasty long term side effects, so it is best for shorter term use to get you over humps and initially to help confirm this is inflammatory in nature. Most people respond within 1-2 days, so you can tell quickly if it working or not. Prednisone is used for both autoimmune disorders and severe allergic reactions. It is also important to try to establish what is causing the allergy symptoms, which can be an exhaustive process. Steroids like Prednisone suppress the inflammatory response regardless of what is causing it.

 
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Old 09-01-2015, 10:47 AM   #5
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Re: Eyelid swelling everyday...what's going on?!

Thanks for your response, I wish I could prescribe myself the meds.
I'll try to convince my doc of the wisdom of your advice.
I'm willing to try everything and anything at this point.
BTW, I have found some of the triggers of my allergic itching response and avoid them, but I cannot for the life of me figure out what is causing my eyelid swelling and redness. It's a mystery.

 
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Old 09-02-2015, 08:13 AM   #6
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Re: Eyelid swelling everyday...what's going on?!

Keep facial cleansers and eye makeup in mind as a possible source of eye allergy symptoms. Just a change of mascara brand could do this. I'm sure you have probably explored that, but if not, worth thinking about. Blepharitis includes swelling, redness and itching of the eyelids, and can be part of a local reaction or a systemic reaction, including autoimmune disorders. These AI diseases are mysterious, and present a little differently in everyone, which makes them even harder to diagnose. Rare is the classic textbook case that screams out its name!

 
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Old 09-02-2015, 11:00 AM   #7
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Re: Eyelid swelling everyday...what's going on?!

So true....strangely enough I was diagnosed with blepharitis a few years ago with plugged meibomian glands by 5 eye doctors, but now they all claim I have no sign whatsoever of blepharitis.
I switched over to Clinique for all my makeup since they're supposedly the safest brand, but can't say it has helped.
Appointment tomorrow for the rheumatologist. Hope I can convince him to treat me already!

 
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Old 08-14-2017, 02:04 AM   #8
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Re: Eyelid swelling everyday ... what's going on?!

Did you ever discover what was going on? I had VERY similar symptoms that curiously started after an acupuncture treatment that caused a horrible headache. I'm not sure if my body freaked out at the headache or what, but I started to get very puffy and swollen eyelids, burning sensations and rashes on my face particularly around my eyes, crepey wrinkly skin around my eyes, and terrible nasal and sinus inflammation that I had never had before that resulted in chronic facial pain. I also had a lot of low grade fevers and generally felt very fatigued. I saw about 20 doctors (most of whom were incredibly dismissive and one of whom told me to just do yoga and get a therapist) before a neurologist referred me to the Mayo Clinic, where they diagnosed me with undifferentiated connective tissue disease and prescribed plaquenil. It was an upsetting diagnosis and treatment plan since it seemed vague and the meds were not guaranteed to work. I've been on plaquenil for about 4 months, and am seeing some improvement with my skin issues, but my eyelid swelling and sinus issues are still bad. I had sinus surgery 6 weeks ago, but am still having horrible chronic pain and scared it only made the situation worse. Feeling hopeless and depressed that this is just my life now, and most days I feel totally alone with it. Not that I wish this disease upon anyone, but it is comforting to know that other people do understand. I hope you're on a road to feeling better!

 
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