I'm losing faith in my ophthalmologist. I was diagnosed with iritis almost 2 years ago (will be 2 years in June). Since then I haven't been able to be off steroid drops for more than a few weeks. He never does anything other than put me on more steroid drops. He asks me if I have anything else going on medically but I don't. I think I've seen him more in the last 2 years than all other doctor visits combined from my entire life. I'm otherwise very healthy.
He says I also have blepharitis and while I do get dry eyes I don't have any of the other symptoms I find online. I don't get itchy, irritated lids. No scales, nothing.
Anyways apparently now I'm a "steroid responder" and have glaucoma although I only found this out by reading the print-out of my visit. He failed to mention glaucoma at all. I am now on neomyacin (2x a day in my left eye, 3 x a day in my right although both are flared right now regardless), combigan 2 x a day, restasis 2 x a day, plus I'm supposed to use theratears 3-4x a day.
I just don't know what to do anymore. Should I see someone else? My regular MD didn't seem to know what it was & only ran 1 test. I feel like my eyes always hurt. They're almost always red and inflamed looking. My right eye (my worst one) is almost always blurry but my eye doc says it's because it's dry so there's nothing they can do about it. Sometimes I can't even drive because it doesn't feel safe with the way my vision is. I'm 33 years old, I homeschool my kids but have days where it's very hard because it hurts to read or look at much of anything, and I'm going back to college in a few months and am terrified I won't be able to keep up because of the days I have where my eyes hurt so much.
I've looked up the lists of specialists and there are never any that live even remotely nearby. When I lived in a middle of nowhere town in NM I actually had untreated iritis for 2 months because they only had a traveling retina specialist & insisted my only problem was blepharitis and therefore refused to give meds. Now I live in NW Florida but am soon moving to Indiana for school. What do I do from here?
2nd opinion? Another Doc?
Moderators: Mike Bartolatz, kwork
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Mike Bartolatz
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Re: 2nd opinion? Another Doc?
you can travel to Bascom Palmer eye institute there in florida for a consultation with either Janet Davis MD or Victor Perez MD. both are specialists I uveitis whom I can recommend for you. I don't know of anyone in Indiana however. the closest would be in Chicago, Dr Debra Goldstein, Howard Tessler and Anthony Ekong.
another option is Dr Russel Read at the U of A in Birmingham.
it is time to get some real testing done as you have gone way too long with undertreated uveitis that is chronic. it is most often linked to a pathogen. were you ever tested for Valley Fever since this started in NM? did you have a history of urinary tract infections prior to you coming down with uveitis which could possibly be linked to TINU? have you been tested for HLA B27 a gene often linked to uveitis? does anyone in you immediate family (blood relative) have any form of arthritis, psoriasis. GI tract disease, CNS diseas. lung problems etc?
wish you the very best,
Mike
another option is Dr Russel Read at the U of A in Birmingham.
it is time to get some real testing done as you have gone way too long with undertreated uveitis that is chronic. it is most often linked to a pathogen. were you ever tested for Valley Fever since this started in NM? did you have a history of urinary tract infections prior to you coming down with uveitis which could possibly be linked to TINU? have you been tested for HLA B27 a gene often linked to uveitis? does anyone in you immediate family (blood relative) have any form of arthritis, psoriasis. GI tract disease, CNS diseas. lung problems etc?
wish you the very best,
Mike
Mike Bartolatz
Moderator
Moderator
Re: 2nd opinion? Another Doc?
Thank you for your quick reply.
Dr Read could be an option - I did not catch that one previously. It's about 4.5 hrs from here. The other ones in Florida are actually a 2 day drive away. When you go to see these doctors that are so far away, how does that work? Certainly it's not very feasible to keep going back for follow ups and what not. We'll be moving in about 2.5 months to Indiana. When we do it looks like we'll be about 2 hours from Chicago so perhaps I should wait to see one of the Chicago docs.
At this point I'm willing to try just about anything. Last night after doing some more reading I noticed the connection between psoriasis and uveitis. I used to have psoriasis, ever since I was kid, but when I went gluten free 7 years ago (because my daughter and husband have celiacs disease) the psoriasis completely went away. I only get it if I accidentally eat gluten which is very rare because I never cheat. Anyways I happen to have an eye appointment today so I brought it up to my doctor and all he said was, "yes, any kind of inflammation in the body can cause uveitis." And that was it. My eye pressure was still high (22 I think they said...a few weeks ago it was 25).
I reminded him that I've been on steroid drops for almost 2 years now and his reply was just that some people will always be on drops for once a day. Ugh, I need to drop this guy don't I?
I was actually tested for HLA B27 when this 1st started and that came up negative. Never tested for Valley Fever. No UTIs or anything like that. I had shingles once long before this all started. My mom has arthritis and a host of other problems (cancer 3x, high blood pressure & cholesterol, recently developed diabetes despite being very healthy). I started having a lot of joint pain about 6 months ago to the point that I could barely walk some days. Regular doc ran tests, did xrays, and found nothing. He told me to start taking glucosamine and to come back if it didn't help. It does actually help. As long as I'm taking it I don't have any joint pain/stiffness at all. I mentioned that to my eye doc as well but when I told him it went away he pretty much shrugged it off. No lung problems or anything like that.
We're going house hunting soon for our move to Indiana. I think maybe I'll see if I can get in to see one of those docs in Chicago during that time. Not sure how much it will help when I won't be able to follow up right away but something has to give.
Dr Read could be an option - I did not catch that one previously. It's about 4.5 hrs from here. The other ones in Florida are actually a 2 day drive away. When you go to see these doctors that are so far away, how does that work? Certainly it's not very feasible to keep going back for follow ups and what not. We'll be moving in about 2.5 months to Indiana. When we do it looks like we'll be about 2 hours from Chicago so perhaps I should wait to see one of the Chicago docs.
At this point I'm willing to try just about anything. Last night after doing some more reading I noticed the connection between psoriasis and uveitis. I used to have psoriasis, ever since I was kid, but when I went gluten free 7 years ago (because my daughter and husband have celiacs disease) the psoriasis completely went away. I only get it if I accidentally eat gluten which is very rare because I never cheat. Anyways I happen to have an eye appointment today so I brought it up to my doctor and all he said was, "yes, any kind of inflammation in the body can cause uveitis." And that was it. My eye pressure was still high (22 I think they said...a few weeks ago it was 25).
I reminded him that I've been on steroid drops for almost 2 years now and his reply was just that some people will always be on drops for once a day. Ugh, I need to drop this guy don't I?
I was actually tested for HLA B27 when this 1st started and that came up negative. Never tested for Valley Fever. No UTIs or anything like that. I had shingles once long before this all started. My mom has arthritis and a host of other problems (cancer 3x, high blood pressure & cholesterol, recently developed diabetes despite being very healthy). I started having a lot of joint pain about 6 months ago to the point that I could barely walk some days. Regular doc ran tests, did xrays, and found nothing. He told me to start taking glucosamine and to come back if it didn't help. It does actually help. As long as I'm taking it I don't have any joint pain/stiffness at all. I mentioned that to my eye doc as well but when I told him it went away he pretty much shrugged it off. No lung problems or anything like that.
We're going house hunting soon for our move to Indiana. I think maybe I'll see if I can get in to see one of those docs in Chicago during that time. Not sure how much it will help when I won't be able to follow up right away but something has to give.
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Mike Bartolatz
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- Joined: Fri Feb 06, 2004 9:58 pm
Re: 2nd opinion? Another Doc?
this is why I tell people to get to an expert in the diagnosis and treatment of inflammatory eye disease like you have. Psoriasis turns into psoriatic arthritis after about 15 years. uveitis is directly linked to this underlying condition. it is frequently caused by the IL23R and ERAP1 genes which are linked to ankylosing spondylitis, psoriasis/psoriatic arthritis, autoimmune thyroid disease, breast cancer, and is also seen along with systemic lupus erythematosus, multi-organ sarcoidosis, Behcet's disease.
today psoriasis can be treated with a drug that blocks IL23R called Stelara (ustekinumab). this can also be effective in treatment of uveitis when this gene is present in an individual. although the most common link to uveitis and the above forms of arthropathies is the HLA B27 gene ( only found in about 70% of these things) the other 30% could be linked to the iL23R gene. I know a child with difficult to treat uveitis and the IL23R gene currently on Stelara who's uveitis has been controlled after failing other DMARD drugs and TNF A blocking drugs.
ankylosing spondylitis like arthritis appears in Psoriasis. GI problems of celiac disease, ulcerative colitis and Crohn's disease can appear together making diagnosis difficult. the low back arthritis sometimes has to be imaged through more than just Xrays to see the damage in the low back and pelvis etc that occurs. Psoriatic arthritis also has major connective tissue disease and enthesis present( inflammation where tendons and ligaments attach to bones).
I would get to DR Read NOW, then get to either DR Ekong or DR Tessler in Chicago once you move. I wish there were more specialists available closer to you. an extremely good doctor is in Nebraska now, DR Quan Nguyen at the University of Nebraska medical school, head of the ophthalmology dept. An outstanding ocular immunologist trained by Dr Foster in Boston at Harvard.
the elevated IOP is of concern as the slow burn of constant inflammation and the steroids will eventually cause damage to the retina/macula. you should have testing done on your retina through Fluorescein Angiogram to look for fluid leaking from blood vessels that can cause Cystoid macular edema. you need testing to see if the elevated pressure has caused damage to the Retina causing peripheral vision loss. I would RUN to see DR Read. he is one of the best specialists in the Southeastern USA. then go to one of the specialists in Chicago or Nebraska when you get there. you might have to travel every couple of months and then six months at a time. these experts are used to working with other ophthalmologists in cases like yours. they keep the local doctors informed and then the local doctors follow what the ocular immunologist tells them to do monitoring meds so that they can be stopped if problems occur. the specialists are also aware that a corticosteroid sparing approach to treatment must be initiated early on or the steroids can eventually cause glaucoma and cataracts to develop. oral steroids have the risk of type II diabetes in those with predisposition for diabetes. there are additional problems that steroids can cause as well.
my best,
Mike Bartolatz
today psoriasis can be treated with a drug that blocks IL23R called Stelara (ustekinumab). this can also be effective in treatment of uveitis when this gene is present in an individual. although the most common link to uveitis and the above forms of arthropathies is the HLA B27 gene ( only found in about 70% of these things) the other 30% could be linked to the iL23R gene. I know a child with difficult to treat uveitis and the IL23R gene currently on Stelara who's uveitis has been controlled after failing other DMARD drugs and TNF A blocking drugs.
ankylosing spondylitis like arthritis appears in Psoriasis. GI problems of celiac disease, ulcerative colitis and Crohn's disease can appear together making diagnosis difficult. the low back arthritis sometimes has to be imaged through more than just Xrays to see the damage in the low back and pelvis etc that occurs. Psoriatic arthritis also has major connective tissue disease and enthesis present( inflammation where tendons and ligaments attach to bones).
I would get to DR Read NOW, then get to either DR Ekong or DR Tessler in Chicago once you move. I wish there were more specialists available closer to you. an extremely good doctor is in Nebraska now, DR Quan Nguyen at the University of Nebraska medical school, head of the ophthalmology dept. An outstanding ocular immunologist trained by Dr Foster in Boston at Harvard.
the elevated IOP is of concern as the slow burn of constant inflammation and the steroids will eventually cause damage to the retina/macula. you should have testing done on your retina through Fluorescein Angiogram to look for fluid leaking from blood vessels that can cause Cystoid macular edema. you need testing to see if the elevated pressure has caused damage to the Retina causing peripheral vision loss. I would RUN to see DR Read. he is one of the best specialists in the Southeastern USA. then go to one of the specialists in Chicago or Nebraska when you get there. you might have to travel every couple of months and then six months at a time. these experts are used to working with other ophthalmologists in cases like yours. they keep the local doctors informed and then the local doctors follow what the ocular immunologist tells them to do monitoring meds so that they can be stopped if problems occur. the specialists are also aware that a corticosteroid sparing approach to treatment must be initiated early on or the steroids can eventually cause glaucoma and cataracts to develop. oral steroids have the risk of type II diabetes in those with predisposition for diabetes. there are additional problems that steroids can cause as well.
my best,
Mike Bartolatz
Mike Bartolatz
Moderator
Moderator
Re: 2nd opinion? Another Doc?
Wow thanks so much for all the information. That's a lot to take in & I think I'm still digesting it all. However I did make sure to pick up the phone and make an appointment with Dr. Read as you suggested. And actually it works out perfectly as we go through that city on our way back from a vacation we're taking & I was able to schedule my appt for the day we would have been driving through.
What's the link with breast cancer? That's one I haven't heard before. My mom had bilateral breast cancer. I don't think I have celiacs although I was never tested and now can't be since I'm gluten free. However my only symptom from eating gluten was the psoriasis. I've never had any GI issues.
Thank you so much for all the information and time you take in replying. It's great to actually feel a little hopeful now.
What's the link with breast cancer? That's one I haven't heard before. My mom had bilateral breast cancer. I don't think I have celiacs although I was never tested and now can't be since I'm gluten free. However my only symptom from eating gluten was the psoriasis. I've never had any GI issues.
Thank you so much for all the information and time you take in replying. It's great to actually feel a little hopeful now.
Re: 2nd opinion? Another Doc?
Oh and perhaps somewhat interesting...
I just found out my best friend from NM, where I first developed all this, has TB. It's latent TB though and she said it was never active. She's on immune-suppressant drugs for her RA and was supposed to be getting tested for TB every 6 months but her doc's office in NM dropped the ball. She just moved and her new doc did it right away and she came up positive. But from my understanding latent TB can't be passed plus her children and her husband came up negative. Maybe it's a stretch, I don't know but at least I feel like I have some trails to follow now.
I just found out my best friend from NM, where I first developed all this, has TB. It's latent TB though and she said it was never active. She's on immune-suppressant drugs for her RA and was supposed to be getting tested for TB every 6 months but her doc's office in NM dropped the ball. She just moved and her new doc did it right away and she came up positive. But from my understanding latent TB can't be passed plus her children and her husband came up negative. Maybe it's a stretch, I don't know but at least I feel like I have some trails to follow now.
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Mike Bartolatz
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- Joined: Fri Feb 06, 2004 9:58 pm
Re: 2nd opinion? Another Doc?
get tested for TB right away as you can get uveitis from TB. antibiotics would be necessary to get rid of it if you have this. it also has potential for arthritic like symptoms. you have difficult to treat uveitis present bilaterally not totally responding to steroids and steroids can even make this worse as they downregulate your immune system making it harder for the immune system to fight of bacteria and viruses etc. while at it get tested for valley fever which is present in NM too.
psoriasis is an autoimmune disease process.
breast cancer was seen at elevated rates in the IL23R and ERAP1 genes. I don't know the specific type of breast cancer however as all I could get my hands on was an article that talks in general terms from 2007. the link is in the topics at the top of this page prior to the posts by general members. you can print it off and take it with you to your doctors for consideration.
especially since you are HLA B27 negative.
I mentioned celiac disease because your psoriasis went away when you stopped gluten intake. other GI problems can occur and also be linked to psoriasis and arthritis through crohn's disease and ulcerative colitis. some of these things can take decades before they appear but when one has active inflammation going on in their body, it causes inflammatory compounds to be produced that can eventually cause these things to appear.
glad you made the appointment with DR Read. tell him hello as I have sent many people to him for consultation in the past. mention Iritis.org and DR Foster's online support groups as I am active there as well.
wish you the best,
Mike
psoriasis is an autoimmune disease process.
breast cancer was seen at elevated rates in the IL23R and ERAP1 genes. I don't know the specific type of breast cancer however as all I could get my hands on was an article that talks in general terms from 2007. the link is in the topics at the top of this page prior to the posts by general members. you can print it off and take it with you to your doctors for consideration.
especially since you are HLA B27 negative.
I mentioned celiac disease because your psoriasis went away when you stopped gluten intake. other GI problems can occur and also be linked to psoriasis and arthritis through crohn's disease and ulcerative colitis. some of these things can take decades before they appear but when one has active inflammation going on in their body, it causes inflammatory compounds to be produced that can eventually cause these things to appear.
glad you made the appointment with DR Read. tell him hello as I have sent many people to him for consultation in the past. mention Iritis.org and DR Foster's online support groups as I am active there as well.
wish you the best,
Mike
Mike Bartolatz
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