I had my first bout of iritis in December 2011. It was just in one eye and my optometrist put me on pred forte for about a 1 1/2 weeks. It came back within a few days of stopping the drops, so then I took the drops for about a month. After that round was over it bounced to my other eye which was around Feb./March of this year. All along my optometrist said it was just a level 1, but at one point I took durezol for about 3 weeks because the redness/cells wouldn't completely go away. I will finally be done with the long pred forte taper in that eye next week. However, my other eye started to flare 2 weeks ago, but the optometrist couldn't see any cells so he put me on drops for 1 1/2 weeks. I just stopped those drops a few days ago and now its coming back again and I have an appt. this afternoon. So basically I've had iritis in one of my eyes since last December, with no more than a 2 week quiet period in between.
About a month ago my optometrist had me see a rheumatologist. He did some blood work and a chest x-ray. The x-ray showed clear lungs and the blood work done was a RPR and HLA B27. That is all that the paperwork they sent me shows. Everything came back negative. Also, I've had colitis for 12 years and I had another colonoscopy this past April because of the iritis. My gastroenterologist said he could see signs of ulcerative colitis from samples he took during the procedure. I've been taking asacol for 12 years for colitis, but it usually doesn't give me too much trouble. Based on all this, my optometrist thinks the ulcerative colitis is the link to the iritis.
My optometrist says he thinks I should just stick to using the pred forte drops to treat things right now. My rheumy said he wasn't putting me on TNF's unless the optometrist felt he should. I've been reading this forum for months and I'm starting to wonder if I need to see someone who specializes in this. Everytime my iritis flares I think about making an appt. with Dr. Foster in Boston, but so far it hasn't effected my vision, so I end up just seeing my optometrist. I've had several people tell me I should see an opthamologist, so I walked in one day to a large eye clinic here for a second opinion. Since I was a walk in, they scheduled me with their optometrist. Turns out he knew my other optometrist and said he was a good Dr. and that he agreed with what he was doing.
I love my optometrist but when I read about the long term effects of steroids, I worry. I don't really want to hurry into taking TNF's either if it isn't necessary. I just need someone who is very familiar with this disease to steer me in the right direction. Mike, I'm hoping you will read this and give me some tips. Sorry for such a long post, but I felt you would need details to give me answers.
Thanks, pianogirl
6 months of flares, Do I need to see a specialist?
Moderators: Mike Bartolatz, kwork
-
Mike Bartolatz
- Posts: 6595
- Joined: Fri Feb 06, 2004 9:58 pm
Re: 6 months of flares, Do I need to see a specialist?
Pianogirl, welcome to the group!
I am with you, this is not going away anytime soon and constant use of corticosteroid of any type will lead to Cataracts or speed catacts caused by uveitis. ulcerative colitis is definitely linked to uveitis and forms of arthritis. you don't have to have the HLA B27 gene to get this stuff. other genes such as IL23R and ERAP1 are also in the picture for this stuff.
if you can get in to see Dr Foster, that is who I would recommend. I am certain he would start you on NSAIDs at a minimum and perhaps DMARD drugs such as Methotrexate, cellcept of Imuran in an attempt to get your eyes quieted down.
You have read here for quite some time now and You know how much I hate inappropriate treatment of uveitis that is chronic or recurrent in nature. I lost vision to that type of vision and that is why I am here, to help others get to doctors that know how to stop uveitis before it causes major vision problems.
I don't know where you live but there might be someone I could suggest that I know will employ MODERN TREATMENT as outlined by the American Academy of Ophthalmology and the American Uveitis Society as well as the Ocular Immunology and Uveitis Foundation.
DR Hinkle works out of MERSI along with Dr Foster so if you cannot get in to see Dr Foster you can make an appointment with him.
contact information can be found at http://www.uveitis.org
your uveitis acts like HLA B27 uveitis bye the way as it ping pongs between eyes. you might have a false negative test for HLA B27.
the TNF A blocking drugs are a mainstay for treatment of ulcerative clolitis and Crohn's disease but they are best used along with Methotrexate or Cellcept from what Dr Foster has indicated to me in the past when questioned about this type of care.
FYI, Durezol is recommended only for short duration treatment , 2 weeks, as it increases risk for cataract formation and Glaucoma, it is the Best drug however to get eyes quieted down quickly as well as to pretreat for Cataract surgery to keep inflammation at bay.
you need an ophthalmologist capabable of treating uveitis with DMARD drugs and unless they have done fellowship level training, they cannot do this and must rely on a Rheumatologist, GI specialist etc to also treat the eyes. this is complicated because the other specialities are not able to watch what is going on inside the eyes and thus they cannot increase medications as required to protect the eyes from damage due to steroids or the Uveitis. while on steroids you also need additional testing for glaucoma at frequent intervals as you will most likely not know of any damage should this happen and then it is too late to get pressure down before the damage happens.
In my personal experience, optometrists cannot treat uveitis properly. they are not medical doctors and don't have the ability to monitor drugs properly from training that doctors have. they should ALWAYS refer to an Ophthalmologist at a minimum and the ophthalmologist should refer to an Uveitis specialst/ocular immunologist when chronic or recurrent uveitis or other chronic eye condition occurs such as Scleritis (can occur along with ulcerative colitis) dry eyes etc.
wishing you quiet eyes,
Mike
I am with you, this is not going away anytime soon and constant use of corticosteroid of any type will lead to Cataracts or speed catacts caused by uveitis. ulcerative colitis is definitely linked to uveitis and forms of arthritis. you don't have to have the HLA B27 gene to get this stuff. other genes such as IL23R and ERAP1 are also in the picture for this stuff.
if you can get in to see Dr Foster, that is who I would recommend. I am certain he would start you on NSAIDs at a minimum and perhaps DMARD drugs such as Methotrexate, cellcept of Imuran in an attempt to get your eyes quieted down.
You have read here for quite some time now and You know how much I hate inappropriate treatment of uveitis that is chronic or recurrent in nature. I lost vision to that type of vision and that is why I am here, to help others get to doctors that know how to stop uveitis before it causes major vision problems.
I don't know where you live but there might be someone I could suggest that I know will employ MODERN TREATMENT as outlined by the American Academy of Ophthalmology and the American Uveitis Society as well as the Ocular Immunology and Uveitis Foundation.
DR Hinkle works out of MERSI along with Dr Foster so if you cannot get in to see Dr Foster you can make an appointment with him.
contact information can be found at http://www.uveitis.org
your uveitis acts like HLA B27 uveitis bye the way as it ping pongs between eyes. you might have a false negative test for HLA B27.
the TNF A blocking drugs are a mainstay for treatment of ulcerative clolitis and Crohn's disease but they are best used along with Methotrexate or Cellcept from what Dr Foster has indicated to me in the past when questioned about this type of care.
FYI, Durezol is recommended only for short duration treatment , 2 weeks, as it increases risk for cataract formation and Glaucoma, it is the Best drug however to get eyes quieted down quickly as well as to pretreat for Cataract surgery to keep inflammation at bay.
you need an ophthalmologist capabable of treating uveitis with DMARD drugs and unless they have done fellowship level training, they cannot do this and must rely on a Rheumatologist, GI specialist etc to also treat the eyes. this is complicated because the other specialities are not able to watch what is going on inside the eyes and thus they cannot increase medications as required to protect the eyes from damage due to steroids or the Uveitis. while on steroids you also need additional testing for glaucoma at frequent intervals as you will most likely not know of any damage should this happen and then it is too late to get pressure down before the damage happens.
In my personal experience, optometrists cannot treat uveitis properly. they are not medical doctors and don't have the ability to monitor drugs properly from training that doctors have. they should ALWAYS refer to an Ophthalmologist at a minimum and the ophthalmologist should refer to an Uveitis specialst/ocular immunologist when chronic or recurrent uveitis or other chronic eye condition occurs such as Scleritis (can occur along with ulcerative colitis) dry eyes etc.
wishing you quiet eyes,
Mike
Mike Bartolatz
Moderator
Moderator
Re: 6 months of flares, Do I need to see a specialist?
Mike, thank you so much. This is very helpful. You are very knowledgable about this and I'm so glad to get some anwers to my questions. I just got back from the eye dr. because I'm starting another flare, and they mentioned the possibility of steroid shots in my eyes. They quiet down while on the pred forte, but then flare back up as soon as I stop. I will talk with my husband and definitely consider getting an appt. with Dr. Foster or the other person you mentioned. I live in East Tennessee, so I doubt there is a specialist near me. I can drive to Charlotte, NC in 3 hours and catch a nonstop flight to Boston from there. Again, thank you so much for the info. I'm an otherwise healthy 38 year old and I find this all very scary.
-
Mike Bartolatz
- Posts: 6595
- Joined: Fri Feb 06, 2004 9:58 pm
Re: 6 months of flares, Do I need to see a specialist?
Foster is about as close to you as anyone by plane. Dr Quan Ngyen in Baltimore trained under Dr foster.
there is Dr Dino Klisovic in columbus ohio who trained under him too. DR Russel Read in Alabama at the UAB is good.
take care,
mike
there is Dr Dino Klisovic in columbus ohio who trained under him too. DR Russel Read in Alabama at the UAB is good.
take care,
mike
Mike Bartolatz
Moderator
Moderator
Re: 6 months of flares, Do I need to see a specialist?
Update - Thank you Mike for encouraging me to see Dr. Foster. I saw him last week and he recommended I start taking imuran and/or methotrexate. Once I got home I wasn't sure if he meant for me to take both. My local rheumatologist has given me pamphlets on both and told me to read the info/side effects and choose one. If I email Dr. Foster and ask him about this, will he reply? I mentioned his email to my rheumy, but I don't get the feeling he is planning to contact him. Also, Dr. Foster said the methotrexate would be administered thru IV once a month, but my local rheumy says I would take it weekly by pill or injection, if I choose to do so. I'm feeling confused and wishing Dr. Foster was closer.
-
Mike Bartolatz
- Posts: 6595
- Joined: Fri Feb 06, 2004 9:58 pm
Re: 6 months of flares, Do I need to see a specialist?
yes privately email Dr Foster about dosing and frequency of taking the Methotrexate or Imuran. if you have crohns disease or uclerative colitis then he may have suggested Remicade or Humira be added to the Mix. monthly dosing of MTX would be unusual so you might be in error on this. it is given once a week either by pill or by injection. one is usually started out on oral meds and when one gets to about 20 or so they switch to injectible form which has fewer side effects.
I assume CSF gave you his contact information but if not you can email him through his contact information at http://www.uveitis.org don't ask him questions at his ASK DR FOSTER forum as you are a patient of his. he will only privately interact with you as you are his patient and he cannot put things out on the internet regarding treatment of a patient for everyone to read which would be malpractice.
ask for copies of all of your rheumatology appointments and ophthalmology appointments back home and then you can provide them to Dr Foster if your local doctors won't interact with him. sounds like a local power struggle brewing too when this happens.
wish you the best,
Mike
I assume CSF gave you his contact information but if not you can email him through his contact information at http://www.uveitis.org don't ask him questions at his ASK DR FOSTER forum as you are a patient of his. he will only privately interact with you as you are his patient and he cannot put things out on the internet regarding treatment of a patient for everyone to read which would be malpractice.
ask for copies of all of your rheumatology appointments and ophthalmology appointments back home and then you can provide them to Dr Foster if your local doctors won't interact with him. sounds like a local power struggle brewing too when this happens.
wish you the best,
Mike
Mike Bartolatz
Moderator
Moderator