Uveitis - Second Occurrence

[d.kiran]

I have copied over the discussion from the Introduce yourself section so that it is available in one place for anyone else who might search.

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Hi Mike. Thank you for this awesome website. You helped me guide my way. Here's my story so far.

March - May 2013
Last March, I was diagnosed with Aneterior Uveitis in my right eye. This was my first diagnosed uveitis incident. This was on a friday and the only appointment that I could get was with an optometrist (I have never had a reason to visit an opthamalogist before). He prescribed Pred Forte and FML ointment. In a week or so, the inflammation had reduced and in little more than a month, he suggested that I stop taking Pred Forte. Now about the same time I stopped Pred Forte, I had shoulder pain that was pretty intense. My PCP diagnosed it as a rotator cuff injury and he suggested Meloxicam 15Mg (Mobic) taken once a day for 15 days and some stretching exercises. After that, all my symptoms were gone and I had no problems after that.

May 2014 - Current
In May after realizing that my weight had increased about 20 pounds in a year, I went on a Low carb High Fat High Protein diet. This diet made me feel much better, more active and I had lots of energy. However, about a month after starting this, in early to mid of june, I started having left shoulder pain similar to last year. In addition to that, I had mild mid back and lower back pain. The doctor requested X-Rays and noticed that my L5-S1 region had some disc narrowing and "mild degenerative changes are present in the midthoracic spine with mild loss of the disc height". He suggested the same as last year, stretch exercises and Meloxicam 15 Mg which I was on for about two weeks since 6/20. On 7/6, I noticed redness in my eyes and the feeling felt like uveitis. I was again traveling, so I found the nearest optometrist, who prescribed Generic Pred Forte (every 4 hours) and HomaTropaire 5% drops. I took that for 3 days and there was no improvement. When I came back, I went to the same Dr. who had seen me last year and said that my inflammation was severe (4+). He suggested Durezol every 2 hours. I did that and when I visited him on Monday, he mentioned that the inflammation went from 4 to 3+, however, he was noticing that there was inflammation in the posterior part too. In addition, a lot of my joints (my nose bridge, my shoulder and neck muscles, my mid and lower back and my right knee). The pain in my joints is not very painful, it just hurts enough to be noticeable. I wouldn't notice if I was distracted.

After this, I decided to visit Dr. Foster in Boston. I had a very good visit and he mentioned that continued occurrence could impact my vision. The report mentions pan uveitis. It looks like the anterior inflammation has reduced and it has moved posterior. He suggested oral Steroids (50 mg per day, my 3rd day today). He also suggested that I get started quickly on IMT, specifically Methotraxate and Humira. He referred to me to Dr. Callanan in Dallas. I still have flashing lights and my vision has not improved drastically.

I have a few questions that I probably should have asked Dr. Foster, but I could not come up with those right there.

1. I have been tested positive for HLAB27. My inflammation markers and CRP are all high. I am awaiting appointment with Rheumatologist and a GI specialist, however, there seems to be a 3-4 week wait for that. Should I wait to see these doctors and get information on all HLAB27 associated conditions before I start off on IMT ? This will take a month or two at most.

2. How long does it take on average for the inflammation to reduce using oral steroids? My uveitis is on its 3rd week right now. I am wary of continuing Durezol and oral steroids. Is there any dietary intervention that would help reduce inflammation in the short term.

Also, from the searching I have been doing on the net, this does not seem to be common among South Asian (Indian) population as much. I have noticed correlations across the web between Diet and Inflammation related conditions. Have you seen something similar? My short term goal is to reduce my inflammation, then see a Rheumy and GI specialist, Assess my current condition and take an informed decision. The course for most of them seem to be IMT, but I want to go in knowing as much information as I can.

Is this viable in your opinion or would you suggest that I hurry up ?
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The conditions associated with the HLA B27 gene often overlap. they are ankylosing spondylitis, reactive arthritis, psoriasis/psoriatic arthritis, and the GI conditions Crohn's disease and ulcerative colitis. so you can have arthritis in large joints, bamboo spine, low back spondylitis, GI tract diseases crohn's and ulcerative colitis along with uveitis in all of them. connective tissue problems are seen with them all too.
sometimes other genes can also be present as is the case of Crohn's and ulcerative colitis by way of the NOD2 gene. it interacts with GI pathogens resulting in these conditions. sometimes the NOD2 gene can also be linked to Sarcoidosis/Blau syndrome. also linked to uveitis. other genes that can also be linked to many of these things is the IL23R gene and the IL1B gene. there are various meds that block these genes If present other than Remicade or Humira (TNF A blocking drugs) as they stop the activation of TNF A by shutting down the other genes before TNF A is produced by IL17 and IL1.

I would seek out Dr Callanan as the guiding specialist in Texas. the rheumatologist could then work with him depending on what is going on inside your eyes. the underlying arthritis and GI tract inflammation must be controlled in order to get the pan uveitis controlled. just steroids will NOT get your eyes quieted down completely nor will they get your underlying arthritis and GI stuff controlled. they WILL put out the fire but something else has to be used to keep it quiet. I know that DR Foster most often uses Remicade along with Humira but you travel a lot and getting infusions scheduled could be difficult so Humira is probably the way to go since you can inject it yourself on schedule set by your doctors. often Remicade has to be taken more frequently that rheumatologists are used to giving it when uveitis is present.

There are NOD 2 blocking drugs that could be tried too if you have this gene. go to http://www.uveitis.org then select ABOUT THE SUPPORT GROUP and then go to the online support groups where I can help you in the Learning about OID Forum with links to information. I also moderate/administrate http://www.parsplanitis.org for Dr Foster.

over the years I have had many individuals from India both here at iritis.org and the uveitis online support group and PP forum. some have had sarcoidosis, some HLA B27 linked uveitis and crohn's and psoriasis and ankylosing spondylitis. most live in India however but there are specialists in India who have trained under DR Foster.

please comment in our general discussion forum. only I can respond to any topic in the INTRODUCTION forum .

http://uveitissupport.yuku.com/directory#.Ut7bBmDTk3E



Re: My second occurence of Uveitis

UNREAD_POSTby Mike Bartolatz » Mon Jul 28, 2014 3:05 pm
do not delay getting in for treatment. you can quickly develop complications of glaucoma, cataracts and sometimes vascularization of the retina, Cystoid macular edema which can lead to detached retina and bleeding. should you see LARGE BLACK FLOATERS get into an ER as it is bleeding. flashes of light also indicate a potential detaching retina and is emergent as well. double vision is a sign of optic neuritis which can develop. pain inside the eye can also be from optic neuritis or from the iris sticking to the lens and then the ciliary body goes into spasms. for this you use the dilating drop to relax the muscle that is in spasm. aversion to light can be from uveitis, optic neuritis, cornea inflammation from severe dry eyes. often Severe dry is present so get evaluated for this especially if you fee a gritty sensation when you blink etc. dry eyes can lead to compromise of the conjunctival membrane which in turn can lead to abrasion of the sclera (white part of the eye) and the cornea. these in turn can then become ulcerated and infected which can also lead to very serious and potentially blinding consequences.

steroid eyedrops are USELESS for treating intermediate and posterior uveitis. one uses oral steroids and injections of steroid to tissue surrounding the eye to put out the fire. with the oral steroids it can take several months before it is quieted down. some people add methotrexate and Remicade and slowly taper off the steroids. it can take six months before Methotrexate starts working.

each of us is different and the battle can take a year or more for some to accomplish the goal of off all steroids without inflammation. for others round of oral steroids and they are quiet.

I wish I had a better answer for your question.

take care,
mike Bartolatz
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[d.kiran]

Mike, Thanks for the very informative reply.

I have an appointment with Dr. Callanan this Friday. Let me see how that goes.

I am having trouble getting a Rheumatologist with interest in immunology. The earliest appointments I can get are about a month away. Meanwhile, my uveitis does not seem too bad, but I am extremely aware that lack of any physical indications does not mean I am not having a potentially major problem.

I also have setup a Endoscopy and Colonoscopy with a GI specialist. Again, I think I will have to wait till I am off my steroids before I can get that done.

I am really confused as to the order in which I should address these issues. This Friday, I will be meeting Dr. Callanan. I don't have any large floaters (very rarely, some small ones). I do have occassional flashing lights. It has been there for a few days now. Does that warrant a trip to the ER ? I have been told that with cases like Uveitis, the ER frequently mis-diagnose.

Also, about the immunomodulatory therapy, should I be looking to reduce my travel? I mean, if it reduces the efficacy of my immune system, then traveling in an airport and a large metal tube full of people from various places does not seem to be the best place. Or is the risk overrated?

[Mike Bartolatz]

your response to the treatments as seen by the ophthalmologist should guide the treatment meaning if you have inflammation, then treat aggressively with the DMARD and TNF A blocking drug combination as recommended by DR Foster. you MUST stay on the combination for TWO YEARS in order to allow the immune system to stop producing the specific white blood cells attacking your eyes. I don't know why but this is the time Dr Foster uses once off all steroids without inflammation.

many people travel. use alcohol wipes to clean the fold down table and NEVER read the books In the back of the seats. they are terribly contaminated. wear a hospital grade face mask too. always use a paper towel to open the restroom door as you get out of the bathroom.
turn off the overhead air that blows in your face. wipe down the light switch and the door handle of the overhead storage compartment with an alcohol wipe. always keep alcohol wipes in your pocket whether you are in an airplane, restaurant, friends home etc to take these precautions.

if I think of anything else, I'll post it here,

if Callanan won't help you could try DR Lewis at Baylor. I don't know of any fellows of Dr Foster in Texas. the best one near you would be Quan Nguyen at the university of Nebraska second only to DR Foster in ability in my lay opinion. CAllanan should be able to recommend a Rheumatologist and GI specialist that he can work with. Baylor might have the best specialsits BTW.

I hope this helps,
Mike

[d.kiran]

Thanks Mike. That was extremely helpful. I will start to be careful. One of the advantage with a traveling job is that I can try and get a particular assignment in a location. I am trying to see if I can get to LA where I will have better options. Your input has been very valuable. Dr. Foster was very helpful as well. He seemed genuinely to want to help me lead a better quality life.

I will know more about Dr. Callanan's plan by the end of the week. I understand the reason behind the DMARD and TNF-A blocking drug combination. I have decided to continue with the steroids for now. I have lined up Rheumatologists and GI specialists as well to see what other related conditions I might have.

I don't have any confirmed diagnosis yet, but I do have a plan and I do know that I will be getting on DMARDs and Biologics pretty soon. It is a trying time, but I am trying to make the best of it.

I am curious as to the parameters that will be used after two years. Will my Inflammation markers, ESR, CRP levels be checked to see that they have been in normal levels for two years ? Essentially is there a test/parameter that tells me I can stop the immunomodulatory therapy. I am also 32 years old now.

I plan to have kids, and 34 is not too bad if it takes two years especially if it allows me more quality time with them. The changes are overwhelming and thank you for guiding me and others through this testing time.

[Mike Bartolatz]

If you go to LA, get in to see DR Narsing A Rao at Doheny eye Institute. he works with UCLA if I recall correctly so rheumatologist and GI specialists, neurologists would be more up to date on treatment especially if Professors. Dr Levinson is also at UCLA an uveitis specialist.

you will have routine blood work done when on DMARD and biological to make sure they are not causing problems with liver and kidneys. they should also check your heart at some point if Sarcoidosis, lupus etc are suspect.

no special tests at the two year point. the two years is what doctor Foster's experience has indicated as the amount of time it takes to get the immune system to stop attacking the eyes. when doctors say one year and then taper off, often patients will relapse and then the clock resets to restart the two years. at the rate of change In diagnosing problems with the immune system much of the guess work will be taken out of the diagnosis and treatment of many disease processes. micro assays for PCR evaluation are being developed and specific targeted drugs to treat are being developed. this will help to stop the damage of current meds on various organs. most doctors are unaware of a lot of the things I talk about as they don't have the time to spend going through research. go to http://www.uveitis,org and read. also go to the online support groups that I moderate for the foundation. I have the learning about OID forum and pars planitis forum. the links are in the ABOUT THE SUPPORT GROUP section of the site. I can help you easier through those forums especially since you have pan uveitis.

I didn't have the meds offered to me years ago that are now available to treat uveitis and OID. I would give up two years of not being able to have kids in a heart beat having lost significant vision to uveitis and complications from steroids causing glaucoma and cataracts as well as repeated bouts of inflammation resulting in Cystoid macular edema and epiretinal membrane/macular pucker and areas of lost vision in central vision due to them. seeing doctor Foster was perhaps your best move as it sets a higher bar for others to try to reach in your treatment. you can also contact him VIA email for interaction on treatment options and also to have your doctors send him information so he can then suggest stuff to them.

wishing you the very best,
Mike Bartolatz

[Mike Bartolatz]

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