I also got my first iritis for Christmas. Or maybe I had it in high school when my eye was flaming red, felt like fire and teared constantly. The last 2 years have been filled with pain, life changes like not getting to wear contacts ( couldnt swim or get into tri position to ride my bike because of my sight), people drastically downplaying my pain repeating that i was going overboard with optho appointments and check-ups, 37 doctor appointmnts in my daughters first year of life, near weekly 2 hr appts with a baby... so much emotionally trying and compounded with post-partum life I was loosing it. Thank you, wishing I would have found this sooner. It is so scary to know that frequent causes are underlying disease. Even a positive ANA can be affected by a flare so do I have and underlying? Even the cardiologist and OB wondered the same. PMD said not to worry yet after discussion with her rheumatologist husband.
2010, nursing my 3 month old, 31 years old, not real history other than hearing loss ( since age 5), 5 prior years of vasovagal syncope and horrible reflux seen tee years. The usual start, pain in the eye, noting even the dim green light of the alarm clock was painful. Put off a Christmas eve ED visit as basically everyone said I was overreacting and saw optometrist later where I was misdiagnosed. A few days latery I was in so much pain optho saw me. By then it was so bad the first bout lasted over 3 mo. Eye pressure from meds went high enough to where I saw only black and rainbow-like things and again family thought I was overreacting. It was terrifying. The next roughly 18 mo the longest span without flare was 3weeks.
Seems trivial in the grand scheme of life but it was huge and affected every aspect of my life, most importantly my first years with my baby. I had my IUD removed finally thinking that may have affected things. The timing of insertion and first flare seem off, removal and last flare was close. Flared right after removal. Also around that time started maintenance ketorolac drops which are painful but seem to have helped the chronic residual ache I had after the last flare. No flare that I know of since March. Now struggling with aching of my orbit, wondering if sinus pain and allergies are the culprit. Trying various things with PMD now. Flonase trial this week. There is always an underlying fear of flare and missing it or that I have a more serious problem. My thumb now has been painfully peeling, callusing and peeling for months. Again wondering if it is inflammation/autoimmune or something as even steroids aren't helping. I am worried about the stigma associated with my fears. I am a pediatric nurse so often people think I overreact because I see so much craziness.
Thank you again for any feedback and support I may receive here. It helps to read the struggles of others. That sounds terrible but point taken I hope.
Sage
Hormone or breast feeding related?
Moderators: Mike Bartolatz, kwork
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Mike Bartolatz
- Posts: 6595
- Joined: Fri Feb 06, 2004 9:58 pm
Re: Hormone or breast feeding related?
Sage,
Welcome to the group!
have you been checked for Cogan's syndome? sarcoidosis? these things have hearing loss involved as well. sarcoidosis also has sinus problems associated with it. what tests have you been done regarding ANA which you indicate are positive? what pattern? have they biopsied the skin that keeps peeling? Psoriaisis, Lupus, Crohn's disease, sarcoidosis, behcet's disease all have various rashes associated wih them.
often women have a hell of a time getting their uveitis controlled after pregnancy. with the recurrent nature and chronic aspects of your iritis I strongly suggest that you get a true expert in the diagnosis and treatment of uveitis and related conditions involved now, not any later.
with autoimmune disease or autoinflammatory disease invovled the sooner you start DMARD drugs the better long term results for your body systems as well as your eyes. chronic uveitis will lead to changes with the retina and since you are a steroid responder you need a corticosteoid sparing approach to treatment: put out the fire of the inflammation and then keep it out with DMARD and other classes of drugs.
this can take a couple of years once you achieve 'off all steroids without inflammation'.
where do you live so that I can suggest the best Ocular Immunologist near you for a consultation. these specialist ophthalmologists take the time and have the knowledge to manage cases such as yours. they deal with uveitis and other inflamamtory eye disease processes daily, not on the rare occasion that a patient walks in to their offices as is the case with a general practice Ophthalmologist. You may have to travel to see one of them but they will work with your local doctors to mimimize the return visits and you can get most tests done locally.
do you have Cystoid macular Edema, epiretinal membranes, optic neuritis or neovascularization of the retina from your chronic uveitis?
you mentioned elevated IOP from steroid use, do you also have cataracts beginning? do you have dry eyes and dry mouth as well?
other areas of skin rashes?
Please join us in our general discussion forum. I'll do my best to help you through this. You are NOT alone!
wishing you the very best,
Mike Bartolatz
Welcome to the group!
have you been checked for Cogan's syndome? sarcoidosis? these things have hearing loss involved as well. sarcoidosis also has sinus problems associated with it. what tests have you been done regarding ANA which you indicate are positive? what pattern? have they biopsied the skin that keeps peeling? Psoriaisis, Lupus, Crohn's disease, sarcoidosis, behcet's disease all have various rashes associated wih them.
often women have a hell of a time getting their uveitis controlled after pregnancy. with the recurrent nature and chronic aspects of your iritis I strongly suggest that you get a true expert in the diagnosis and treatment of uveitis and related conditions involved now, not any later.
with autoimmune disease or autoinflammatory disease invovled the sooner you start DMARD drugs the better long term results for your body systems as well as your eyes. chronic uveitis will lead to changes with the retina and since you are a steroid responder you need a corticosteoid sparing approach to treatment: put out the fire of the inflammation and then keep it out with DMARD and other classes of drugs.
this can take a couple of years once you achieve 'off all steroids without inflammation'.
where do you live so that I can suggest the best Ocular Immunologist near you for a consultation. these specialist ophthalmologists take the time and have the knowledge to manage cases such as yours. they deal with uveitis and other inflamamtory eye disease processes daily, not on the rare occasion that a patient walks in to their offices as is the case with a general practice Ophthalmologist. You may have to travel to see one of them but they will work with your local doctors to mimimize the return visits and you can get most tests done locally.
do you have Cystoid macular Edema, epiretinal membranes, optic neuritis or neovascularization of the retina from your chronic uveitis?
you mentioned elevated IOP from steroid use, do you also have cataracts beginning? do you have dry eyes and dry mouth as well?
other areas of skin rashes?
Please join us in our general discussion forum. I'll do my best to help you through this. You are NOT alone!
wishing you the very best,
Mike Bartolatz
Mike Bartolatz
Moderator
Moderator