Some questions

Post here to exchange iritis general information and support with others.

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Stonecypher
Posts: 4
Joined: Sat Jun 30, 2012 10:23 pm

Some questions

Post by Stonecypher »

I have several questions regarding my iritis. First of all, I've read on some of the posts on this site that when the pupil gets stuck in dilation especially if high pressure accompanied the iritis that it could be a sign of herpes caused iritis. What are some of the other signs that it is herpes related? I have only had irits in one eye (R) and it is now stuck in dilation and I have had very high pressure with my flare-ups. We had thought I was a steroid responder and that is why the pressure was high, but perhaps it was because of herpes? This current flare-up though, the pressure has been very high but it was easier to control with drops than in the past. In my past flare-ups the pressure didn't get high until I'd been on the steroid drops, I think. This time the pressure was high from the beginning. The reason I question the herpes thing is that it seems like if it is herpes in my case then wouldn't I get iritis flare-ups when I get herpes outbreaks? I do get cold sores in my nose and mouth several times a year, but it has been 10 years since I've had an iritis flare-up. And, the things that usually trigger a herpes out break (illnesses, stress/trauma, weakened immune system) haven't been causing me get get iritis. I've been through the most traumatic experiences of my life in the past 5 years and no iritis.
I've wondered if it is hormone related. The first time I got iritis was shortly after my first miscarriage. Then when I got pregnant, no iritis. But, shortly after my first baby was born, around the time my monthly cycles started up again, it came back worse than before and took about 6 months to get rid of. Then it didn't come back until this flare-up. This time the iritis showed up on the day I started my first period after my most recent baby was born. It makes me think there is something about my hormones switching after I have a baby (or a miscarriage) that is triggering something. However, I must say, I did have a baby in between those two and nothing happened regarding iritis with him. So, I don't know if I should think this is herpes or hormones. Or maybe both? Maybe the hormones triggers the herpes. But what about all the other herpes outbreaks over the past 10 years with no iritis?
Anyway, other questions:
This current ophthalmologist I'm seeing seems competent. I don't really have any complaints about him. But, I did think it was strange he never dilated my eye. Every time I've had flare ups in the past, especially when I'd see a new dr. for the first time, they'd always dilate my eye before doing the first exam. Is it strange or normal to not dilate the eye in an iritis case? I wondered if that could be why my iris is stuck and won't contract back down.
Is there anything I can do to get that muscle working again? The dr. said no. But, he also didn't act like it was a big deal either and didn't give me any advice for how to protect my eye from too much light now. He was just like, "yeah, that can happen." But, I'm finding it very worrisome. If I forget to close my eye or put on sunglasses before looking out the window, I see dark spots from too much light exposure. Will I just have to live the rest of my life with sunglasses on?

Oh, and a side note, I haven't had blood tests done to see what related diseases I could possible have. I did have the standard blood tests when I was pregnant last year and they didn't show anything. I plan on doing more next year (can't pay for it until after the first of the year). But, I've read about all the related diseases and none of them sound like anything I've experienced and there isn't a history of them in my family.

I guess that is all for now. It seemed like I had more questions but I can't think of anything else at the moment.
Thanks!
Karen
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Some questions

Post by Mike Bartolatz »

Hi Karen and Welcome to the group!
it would be odd for herpes sx virus to go into hibernation without antiviral medications but if you have a LOT of adhesion between the iris and the lens and glaucoma, it could be this or it could be something else. it wouldn't hurt to try an antiviral medication to see if it calms things down since you do get cold sores in your nose and the virus can move up a nerve and into the eye to cause mischief that can be quite severe.
you should have a dilated exam too. as this is the only way to look at parts of the eye that are often get uveitis especially the region just behind the iris.
at to pregnancy, hormones change during pregnancy. usually women get a new bout of iritis and then by the third trimester the eye quiets down. then shortly after giving birth, the eye flares up again with a vengeance.

often one develops cataracts from the uveitis or from steroid use and then when the lens is removed, the adhesion will be broken and if the eye isn't paralyzed from something such as the herpes virus, they the iris will open and close once again.
one other thing, the herpes virus can cause holes to appear in the iris ( so can syphilis however).


DR Anthony Ekong in Ill. is a good ocular immunologist. so is DR Howard Tessler. In Kansas City there is DR Joseph Tauber and DR Janeseki (sp) is in Michigan. DR Klisovic is in Columbus, Ohio.

have you been tested for Clotting factors and Amyloidosis things that can cause miscarriage and are often linked to autoimmune conditions?
do you get skin rashes or have arthritis? do you cough a lot? GI problems? mouth sores, dry skin, dry eyes and dry mouth?
do you have neuropathy, vascular problems, thyroid disease?
make sure you tell your doctors about the herpes virus problem with your nose.

mike
Mike Bartolatz
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Stonecypher
Posts: 4
Joined: Sat Jun 30, 2012 10:23 pm

Re: Some questions

Post by Stonecypher »

Hello, Mike. Thank you for your response. As far as I know I have not been tested for any of those things you listed. I do not get any of those symptoms either, except I do on occasion (maybe a couple times a year) get mouth sores and my feet are often cold (I don't know if that counts as a vascular problem, though.)

I asked my ophthalmologist if my iris was stuck in dilation because it was stuck to the lens and he said no. He said that the muscle that contracts the iris was damaged and not functioning. I'm assuming he could see that it wasn't stuck to the lens by just looking with the slit lamp, right? It made me wonder if he had dilated my eye, maybe that would have forced the iris to relax and perhaps that muscle wouldn't have become damaged. (Or if it is stuck to the lens and he's wrong, maybe by being larger it wouldn't have gotten stuck.) I'm just not sure what to make of this and whether or not I should see someone else and get another opinion about why my iris is stuck. The inflammation is mostly gone now. I still have a few cells floating around and am taking the pred forte 3 times a day with on combigan drop once a day. I am supposed to go back to see the dr. in about 3 weeks.
I live in the Denver area. I saw on the list of dr.s on this site that there was one listed for Denver. When I looked him up online I couldn't see anything that made me think he would be extra good for a uvitis paitent. It looked like he specialized in retina stuff. Does he have some expertise in this area that they didn't list?

Thanks!
Karen
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Some questions

Post by Mike Bartolatz »

Colorado

Mark Dacey, MD
Colorado Retina Associates
8101 E. Lowry Blvd., Suite 210
Denver, Colorado 80230
Phone 303-261-1600
Fax 303-261-1601


Erik Letko, MD
Corneal Consultants of Colorado
8381 Southpark Lane
Littleton, CO 80120
tel: 303 730 0404, fax: 303 730 6163

contact one of these two specialsts in the Denver area. they are both good ocular immunologists trained by Dr Foster.
it anyone near you can sort this out it would be one of them.

make the appointment right away. this is definitely not a normal herpes sx reaction but it could be with the glaucoma and the frozen pupil not from adhesion. the oddest part is that the inflammation comes and goes for protracted periods of time.
if it is, then antiviral meds and perhaps a drop of steroid a day might be in the cards for a long time.
when you call indicate that you have been sent by Dr Foster's online support group and that your case isn't normal to say the least. also indicate that you get mouth and nose sores from time to time as this is frequently ralated to the herpes virus but there could be other systemic causes not caused by a virus so determining what is truly the cause is important to get your eyes quieted down and hopefully to stop the glaucoma if it is from the disease or steroids used to treat it.

I wish i could be of more help but I'm not a doctor and only someone who examines you can determine what is the cause and treat accordingly.

take care,
mike
Mike Bartolatz
Moderator
Stonecypher
Posts: 4
Joined: Sat Jun 30, 2012 10:23 pm

Re: Some questions

Post by Stonecypher »

Hi Mike, I called Dr. Dacey's office but they won't see me with out a referral from my current ophthalmologist. I think that shouldn't be a problem for me to get but here is my concern: my current inflammation is nearly gone, my current dr. is gone on vacation for the next couple weeks. By the time I get the referral and have an appointment, I probably won't have any inflammation at all. Will it still be worth going to the specialist or should I wait until I have another flare? I don't have insurance so I'll have to pay the cost out of pocket (minimum $250), which I'm willing to do if I feel he may have some insight into what is causing my problem. But, if me not having a current inflammation makes it impossible for him to assess anything, it isn't worth the money to go.
However, my iris is stuck, perhaps he'll have some insight into that even though it isn't currently inflamed. And, would an ocular immunologist do blood tests to look for related diseases? Or would I have to go to a regular MD to have such tests done? If this specialist would do those tests, that might be another reason to go even without an inflammation to help prevent future ones.
So, I'm torn. I want to see the specialist if it will give me useful info, but if a current flare is necessary for the dr. to get that info then I should wait and not waste my money.

What do you think?
k
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Some questions

Post by Mike Bartolatz »

it is hard to say. if you go to the specialist, you will be able to see him much sooner as you would be an established patient if this returns. if it isn't related to the herpes virus, then something as simple as taking an oral NSAID might be able to keep the eye quiet but you would have to have routine blood tests to make sure the NSAID isn't causing systemic problems with your kidneys or liver. often Naprosyn can do this which is a generic taken at prescription strength. regular ophthalmologists don't routinely treat with anything but corticosteroids and over time they can cause cataracts or glaucoma as you know. you have to get off the steroid rollercoaster if at all possible. recurrent uveits can also cause problems and over time other things can start changing inside the eye. rarely do doctors tell you this. macular edema can occur for example.

if your iris no longer functions you can get a contact lens colored to look like your other eye in a closed postion which would help with the problem of too much light getting to your retina which can cause damage but I don't know the cost associated with having one made.

your lack of insurance makes things more difficult financially. the specilist can tell your GP which tests to order but the cost would probably be the same no matter who orders the tests. you should probably have an Optical coherence tomography test to look for Cystoid Macular Edema at some point and testing to see if the high pressure has taken out any peripheral vision. has the color of your optic nerve changed or is there cupping from the high pressure?

your GP might also be able to get you an appointment if the ophthalmologist won't do it for you.

in a few years just about everyone will have insurance if the health care act stays in place. I don't know what Colorado has in place for individuals like you so they can buy into Medicade for example but the cost to preserve your vision would be worth it. your uveitis will most likely keep coming back but it is impossible for anyone to say for certain.

take care,
Mike
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