help! iritis all the time

[martdim]

Hello all,

At my wits end, hoping someone might have some ideas

My anterior uveitis problems started in 2009. Since then, I have had over 20 flare-ups. Right now, I am the point where I don't have iritis only when I use at least one drop of steroids per day but it wasn't like that in the beginning. After so much steroids, my eye has now lost some of its vision.

Long (long!) story short, iritis started after two infections in the five months prior. Doctors haven't been much help. The last one, touted as one of the best specialists in the area, doesn't realy care to understands my symptoms and what could be causing it, gets realy upset when I ask questions and now wants to put me on a long-term (close to a year) treatment with pills that would nearly kill my immune system and on top of that may cause damage to the liver.

I understand that it's impossible to give meaningful advices with so little information but I am reaching to someone who's had similar symptoms and has managed to beat it.

I WILL BE FOREVER GREATFUL! (and you will be in my Christmas cards list

thank you

[Mike Bartolatz]

welcome to the group!
you indicate your iritis won't go away. is it in only one eye? if so do you get cold sores? often this type of iritis is related to the herpes simplex virus.
if it ping pongs between eyes, it is frequently caused by the HLA B27 gene. the next step on a step ladder approach to treatment for HLA B27 (autoimmune uveitis) would be to initiate a corticostroid sparing approach to treatment using an NSAID such as celebrex, dolobid or naprosyn taken at prescription strength. if within six months you achieve the goal of 'off all steroids without inflammation' then you would continue on the NSAID for TWO YEARS in order to retrain your immunes system to stop attacking your eyes.

if you are a younger individual (female) with a history of urinary tract infections, then TINU might be a possible diagnosis.
if anyone in your immediate family has a history of forms of arthritis, connective tissue disease, GI problems, Multiple sclerosis, sarcoidosis etc, then those should be looked into. the DMARD drugs are used form this type of thing starting with Methotrexate, cellcept alone or in combination with other classes of drugs to retrain your immune system to stop attacking your eyes by mistake. this too takes about two years to accomplish once off all steroid without inflammation.

a study about two years ago done on data from multiple centers around the world found that the use of DMARD drugs is relatively safe because the amount of drugs used is far lower than studies years ago on transplant patients where cancer was indicated as a potential side effect of the drugs. other studies on arthritis patients and connective tissue disease patients also found that the sooner DMARD drugs were used, the less likely cancer would become a problem.

Without further input on your history I can't provide any additional information for you.

the herpes sx virus would require use of an anti viral medication to put the virus into hibernation and to keep it there so long term use of anti viral medication along with a drop of corticosteroid would be recommended. HSV uveitis is under diaganosed.

another pathogen that has been isolated in fluid in the front of the eye is the H pylori bacterium.

I hope this helps,
Mike

[martdim]

Thank you Mike for the quick response!

is it in only one eye?

yes

if so do you get cold sores?

No. And to expand on this, this is one of the questions I have been asked numerous times by doctors. The others are: "Do you have pain in the joints?", "Does your neck hurt if you lean your head back?". The answer to all is No.

HLA B27 and B5 are negative. Actually, all the tests I have done have come negative.

I am 40 year old male.

another pathogen that has been isolated in fluid in the front of the eye is the H pylori bacterium.

10 years ago, when I had problems with the small intestine, I was tested for H pylori after which I underwent a two-week treatment with antibiotics to kill it. Haven't been tested since

specifically, what is your opinion of Methotrexate?

here is my thinking and I would like to ask you if you think there is something here. This problem started somehow, I don't know how. Let's assume it started because I overdid coffee in addition to stress. In my situation presently, if I exclude coffee and try to manage the stress, is it realistic to expect that I will be able to beat this on my own, or should I consider drugs no matter what? I used coffee as an example but I have excluded many other foods from my diet: coffee, sugar (as much as possible), milk products, meat (only fish allowed). The one other thing I am thinking of excluding is gluten even though I was tested for celiac disease 10 years ago.

So my dilemma is: should I try to beat this on my own (and risk losing my eye if I can't), or should I take the drug (and risk getting cancer, damage the liver and catching one of the many innocent bugs my kids bring from school every winter)



Thanks for listening!

[Mike Bartolatz]

there are risks and benefits to all medications, herbal products and even diets. if you have tried NSAIDS at prescription strength such as Celebrex, Difusinal or Naproxen, then Yes Methotrexate alone or in combination with other meds MIGHT be the way to go. I do suggest that you go to an Ocular Immunologist for evaluation. H pylori may respond to antibiotics but once the immune system starts attacking the eyes, it can be difficult to conquer. the immune system can still attack the eye by targeting proteins used by the bacterium to enter the cells of the eye causing inflammation. you might require additional antibiotic therapy and testing as well as other meds.
there are many other things that might be looked into and (about 100 causes for uveitis) the Ocular Immunologist can help you, many times disease markers can take decades before the markers appear in you blood so some tests require retesting periodically to look for the underlying cause. some diseases respond to various combinations while other combinations seem to work better for others.

it wouldn't hurt to avoid gluten to see if you feel better. My daughter has Ceiliac problems as does her daughter of 2 years old. they are also lactose intolerant. there are good alternatives at health food stores but they are very expensive compared to normal foods.

DMARD drugs have been shown to be no more likely to cause cancer in Uveitis patients than the general population not on them.
TNF A drugs to pose additional risks of cancer etc.

Only you can decide along with the Ocular Immunologist what is appropriate for you. You may have to travel however to see one of the most capable specialists. tell me what state you live in and I'll suggest the BEST ones to you.

wish you quiet eyes,
Mike