had my third flare in the right eye since last december.
i am tired of being frustrated, feared, dissillisioned by this puzzling disease which seems to not get cured.
bear with me for the long post. the post or the replies to it might help others who are in a state like mine.
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after the first attack .. they found out that it was a bad one, granulomatous, big chunks of cells. they put me on steroids(tapered each week for 4 weeks), atropine, alphagan, cosopt(since my pressure shot up to the 40s.) .
- they found i have the HLA gene.
- there is a small (healed scar) in the cornea. the scar happened because of a sports injury 5 years before. they dont think it has any relation.
- no other infectious or systemic cause found
2nd attack : march last week
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- I was off the drops for two-three weeks
- same symptoms, the throbbing was worse this time the pressure shot up to 40 but came down in an hour after putting the drops
- interestingly a very mild flare this time . but still IOP was in 40s
- same sets of drops prescribed again except the atropine.
- saw that the eye was little red and the pupil was smaller than the left and there was little pain
- rushed to the emergency (since its a weekend). they said the flare was even milder than the second one (almost negligible)
- IOP was 12/12 ( I took COSOPT, alphagan once)
- back on the eye drops except the atropine
now they say it might very well be the HLA since the attack is kind of recurrent, i dont think they are sure of this but i guess that is more because of the nature of the disease. i am seeing dr. manka (in MSP) on next month and I am flying to cambridge to see dr. foster end of next month. basically i am trying whatever i can so that the experts might streamline to a cause and treat it or tell me that i have to live with it. i see traffic lights scatter a liitle more than my left which already makes me think of cataract at a very early age than average.
i am lookng for some hope or some information which gives some hope. its extremely difficult to think positively in such a situation. last i remember i was a super healthy person who used to run marathons, its all changing.
third attack
Moderators: Mike Bartolatz, kwork
third attack
Last edited by mvikkk on Mon May 07, 2012 12:35 pm, edited 1 time in total.
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Mike Bartolatz
- Posts: 6595
- Joined: Fri Feb 06, 2004 9:58 pm
Re: third attack
I assume you are speaking of the HLA B27 gene sometimes associated with anterior uveitis. there are other HLA genes related to otehr conditions also associated with uveitis related to things Like Behcet's disease triggered by TB and it is the HLA B51 gene.
Multiple sclerosis is sometimes linked to the HLA DW15 and HLA DW2 genes in pars planitis patients (intermediate uveitis)
ankylosing spondylitis, psoriasis/psoriatic arthritis. reactive arthritis, ulcerative colitis and Crohn's disease are sometimes seen with HLA B27 and uveitis.
the herpes Sx virus can be linked to uveitis that is in one eye, is granulomatus in nature, has a lot of adhesions between the iris and lens causing glaucoma. you sound more like a person who's pressure goes up on steroids (like me) which causes damage to the eye just like glaucoma.
the HLA B27 gene often causes uveitis that 'ping pongs' between eyes. you quiet one down and then it starts up in the other and it continues this way.
if it isn't related to a virus or other pathogen, then the DMARD class of drugs can help. Methotrexate is one such drug frequently used.
NSAID therapy has been used very successfully by Dr Foster and hopefully you will be able to try Celebrex, dolobid or Naprosyn to control autoimmune related uveitis.
As I indicated TB can be related to uveitis and arthritis and a whole host of other problems systemically. it causes granulomatus uveitis as well.
sometimes one has to biopsy an eye to find out if it is TB related.
you might want to join the online support group of Dr Foster at http://www.uosg.org I volunteer there as well as at this forum and other forums on the internet.
wish you the very best,
Mike Bartolatz
Multiple sclerosis is sometimes linked to the HLA DW15 and HLA DW2 genes in pars planitis patients (intermediate uveitis)
ankylosing spondylitis, psoriasis/psoriatic arthritis. reactive arthritis, ulcerative colitis and Crohn's disease are sometimes seen with HLA B27 and uveitis.
the herpes Sx virus can be linked to uveitis that is in one eye, is granulomatus in nature, has a lot of adhesions between the iris and lens causing glaucoma. you sound more like a person who's pressure goes up on steroids (like me) which causes damage to the eye just like glaucoma.
the HLA B27 gene often causes uveitis that 'ping pongs' between eyes. you quiet one down and then it starts up in the other and it continues this way.
if it isn't related to a virus or other pathogen, then the DMARD class of drugs can help. Methotrexate is one such drug frequently used.
NSAID therapy has been used very successfully by Dr Foster and hopefully you will be able to try Celebrex, dolobid or Naprosyn to control autoimmune related uveitis.
As I indicated TB can be related to uveitis and arthritis and a whole host of other problems systemically. it causes granulomatus uveitis as well.
sometimes one has to biopsy an eye to find out if it is TB related.
you might want to join the online support group of Dr Foster at http://www.uosg.org I volunteer there as well as at this forum and other forums on the internet.
wish you the very best,
Mike Bartolatz
Mike Bartolatz
Moderator
Moderator
Re: third attack
Dear Mike,
Thanks for the reply. You posted some interesting facts. Just wanted to clarify on a few points.
- Yes, I just have the HLAB27 gene and no other HLA related things.
- The infectious disease dr. told me that I do NOT have TB. I have the antibodies which means, that I might have been exposed to it and my immune system took care of them but has become 'hypersensitive' because of that. This kind of iritis(rare in the US) has been reported in the literature as Latent TB iritis. I read some journal papers which mentioned that the recurrence stops in about 80% cases once the treatment starts with Steroids AND Isonaizaid to completely eradicate any (inactive)myobacteria if it exists and make the immune system behave normally. So i guess there is some hope. I can share the research papers if someone is interested.
- As mentioned below my flares have reduced in their intensity, the last one was not even 1+ , the doctor said he might have seen 1 or 2 cells. So I am not sure if this is getting better.
- I am seeing Dr. foster next month, and I have seen his forum also but I have never been part of a support group, so I am not sure how it works.
I was kind of desperate when i wrote the first post. but the important thing is we should keep looking for solutions, new research. I know it is not easy but I want to believe that our minds are capable of that strength.
Thanks Mike !
Thanks for the reply. You posted some interesting facts. Just wanted to clarify on a few points.
- Yes, I just have the HLAB27 gene and no other HLA related things.
- The infectious disease dr. told me that I do NOT have TB. I have the antibodies which means, that I might have been exposed to it and my immune system took care of them but has become 'hypersensitive' because of that. This kind of iritis(rare in the US) has been reported in the literature as Latent TB iritis. I read some journal papers which mentioned that the recurrence stops in about 80% cases once the treatment starts with Steroids AND Isonaizaid to completely eradicate any (inactive)myobacteria if it exists and make the immune system behave normally. So i guess there is some hope. I can share the research papers if someone is interested.
- As mentioned below my flares have reduced in their intensity, the last one was not even 1+ , the doctor said he might have seen 1 or 2 cells. So I am not sure if this is getting better.
- I am seeing Dr. foster next month, and I have seen his forum also but I have never been part of a support group, so I am not sure how it works.
I was kind of desperate when i wrote the first post. but the important thing is we should keep looking for solutions, new research. I know it is not easy but I want to believe that our minds are capable of that strength.
Thanks Mike !
Re: third attack
just want to add one more thing ..
the pressure shoots up only during the flare ( it did not shoot up and was 12 during the third time).
- i am not a steroid responder as my dr. says , because in the quiet eye, even without the glaucoma drops and just on steroids the pressure has been 10-14.
- the high iop is a characteristics of an infections triggered cause or it might be due to a special eye structure for some people (called as pauschler shasmone(wrongly spelled)). the later one is rare.
the pressure shoots up only during the flare ( it did not shoot up and was 12 during the third time).
- i am not a steroid responder as my dr. says , because in the quiet eye, even without the glaucoma drops and just on steroids the pressure has been 10-14.
- the high iop is a characteristics of an infections triggered cause or it might be due to a special eye structure for some people (called as pauschler shasmone(wrongly spelled)). the later one is rare.
-
Mike Bartolatz
- Posts: 6595
- Joined: Fri Feb 06, 2004 9:58 pm
Re: third attack
http://www.google.com/search?sourceid=n ... i=g4&pbx=1
DR Foster considers anything less than 5 cells (actual cells) to be a quiet eye BTW and he wouldn't treat. a +1 is 10 cells on the 1 to 4 scale of inflammation.
Dr Foster will be able to tell you what is causing what. your HLA B27 status indicates a predisposition to uveitis. what the trigger might be can be many things most often of a GI complaint or sexually transmitted when Reactive arthritis is present.
did you ever have conjunctivitis? this is often mistaken as a cause of red eye in anterior uveitis patients. if intermediate uveitis is present, then vitrectomy can help remove the cells that have a memory and are mistakenly attacking your eyes. the fluid removed can be tested for DNA for mycobacteria Tuberculosis or other Mycobacteria that could cause uveitis. usually TB attacks the back of the eye if I recall correctly and then causes 'pan uveitis'.
wish you the best,
Mike
DR Foster considers anything less than 5 cells (actual cells) to be a quiet eye BTW and he wouldn't treat. a +1 is 10 cells on the 1 to 4 scale of inflammation.
Dr Foster will be able to tell you what is causing what. your HLA B27 status indicates a predisposition to uveitis. what the trigger might be can be many things most often of a GI complaint or sexually transmitted when Reactive arthritis is present.
did you ever have conjunctivitis? this is often mistaken as a cause of red eye in anterior uveitis patients. if intermediate uveitis is present, then vitrectomy can help remove the cells that have a memory and are mistakenly attacking your eyes. the fluid removed can be tested for DNA for mycobacteria Tuberculosis or other Mycobacteria that could cause uveitis. usually TB attacks the back of the eye if I recall correctly and then causes 'pan uveitis'.
wish you the best,
Mike
Mike Bartolatz
Moderator
Moderator
Re: third attack
Wow, thats some new information .. I often have had Gastro problems, but since I changed my diet after irits (vegan) .. things have been better.
All STDs test were negative.
Last I can remember, I had conjunctivits when I was 16 (i am 27 now).
Thanks for all the information
All STDs test were negative.
Last I can remember, I had conjunctivits when I was 16 (i am 27 now).
Thanks for all the information
-
Mike Bartolatz
- Posts: 6595
- Joined: Fri Feb 06, 2004 9:58 pm
Re: third attack
Gastro intestinal problems should be followed closely as GI problems are linked to the HLA B27 gene as well as forms of arthritis.
this starts at the mouth and goes to the other end so to speak. do you get mouth sores? genital sores or rashes? this can occur with reactive arthritis. crohn's can have mouth ulcers as well. often yeast infections appear in the oral mucosa as well causing thrush.
often the first bout of iritis is diagnosed as conjunctivitis by the GP or Pediatrician as they don't have the knowledge or tools to examine the eye and see the cells of iritis or uveitis in the middle or back of the eye. the slit lamp microscope is required to see them along with a dye put into the eye. they are also unaware of how red eye of uveitis appears as it is different then conjunctivitis, the red eye of conjunctivitis starts at the outside corners of the eye and proceed toward the iris. it is just the opposite with iritis and corneal/imbic involvement.
write down your comment about pressure shooting up only during an attack and tell DR Foster about this. it is a bit odd to say the lease if it isn't from steroid use. you are putting the eyedrop into ONE eye and that is the eye that is getting an increase of pressure. if you were on oral steroids it might cause pressure change in both eyes but for me I only had one eye active at a time and my pressure elevation was in only the eye with active inflammation and which was being treated with injections or topical or oral steroids.
just my thoughts,
mike
this starts at the mouth and goes to the other end so to speak. do you get mouth sores? genital sores or rashes? this can occur with reactive arthritis. crohn's can have mouth ulcers as well. often yeast infections appear in the oral mucosa as well causing thrush.
often the first bout of iritis is diagnosed as conjunctivitis by the GP or Pediatrician as they don't have the knowledge or tools to examine the eye and see the cells of iritis or uveitis in the middle or back of the eye. the slit lamp microscope is required to see them along with a dye put into the eye. they are also unaware of how red eye of uveitis appears as it is different then conjunctivitis, the red eye of conjunctivitis starts at the outside corners of the eye and proceed toward the iris. it is just the opposite with iritis and corneal/imbic involvement.
write down your comment about pressure shooting up only during an attack and tell DR Foster about this. it is a bit odd to say the lease if it isn't from steroid use. you are putting the eyedrop into ONE eye and that is the eye that is getting an increase of pressure. if you were on oral steroids it might cause pressure change in both eyes but for me I only had one eye active at a time and my pressure elevation was in only the eye with active inflammation and which was being treated with injections or topical or oral steroids.
just my thoughts,
mike
Mike Bartolatz
Moderator
Moderator