Iritis Help...

sadeyes · Post by **sadeyes** » Mon Jan 08, 2007 12:04 pm

I'm glad I found your website.

I have iritis and episcleritis for the last three years. I'm presently on lotemax, cospot & acular. My present Doctor is recommending me to go on Methotextrate. I recently got a second opinion from Dr. Willard Abraham (Uveitis Specialst) in New Haven. My question is this what's the difference between a Uveitis Specialist and a Ocular Immunologist. Also have you heard anything about Iritis being caused by workplace environments?

Thank you for your website.

Mike Bartolatz · Post by **Mike Bartolatz** » Mon Jan 08, 2007 9:58 pm

An Ocular Immunologist is a Fellowship level EXPERT in the diagnosis and treatment of Uveitis. Skills are much more than someone with just an interest in uveitis who hasn't done fellowship level trainging, anyone can call themselves an 'expert' in uveitis. I even know of one rheumatologist without opthalmology training who calls himself an 'uveitis specialist'. he is located at a major eye institute on the west coast of the USA.
being so very close to TRUE experts, I suggest that you get another opinion. DR C Stephen Foster is in Cambridge, MA. DR Samson is in NYC, DR Chu is in NJ, DR Nguyen is in Baltimore, Dr Nussenblatt is at the National eye institue.
contact information can be found in our SPECIALIST forum or you can go to http://www.uveitis.org and look through the SPECIALIST list located in the PATIENT INFORMATION section of the site.

Acular is of no benefit in the treatment of uveitis. it is a topical NSAID that cannot penetrate to the interior of the eye where the inflammation is located.
long term uveitis CONTROLLED only with corticosteroid eye drops will eventually lead to cataract formation and possibly glaucoma. If you have IDEOPATHIC uveitis it is an autoimmune disease process and must be treated systemically to irradicate. NSAID therapy often will break the cycle in about 70% of individuals. if not then chemotherapeutic immunomodulation may be needed to retrain your immune system to stop attacking your eyes. If you are experiencing elevated Intra Ocular Pressure from taking the corticosteroids, then a steroid sparing approach to treatment is required to prevent permanent damage to your vision.

wish you the very best,
Mike

sadeyes · Post by **sadeyes** » Fri Jan 19, 2007 9:01 pm

I went to see Dr. Abraham in New Haven last week. Dr. Abraham does not seem very worried about using Lotemax two times a day. My regular eye doctor wants to put me on methotextrate right away. I find all of this very troubling...

I'm following your advice and have an appointment with Dr. Samson in New York in the beginning of Feb.

Does anybody know about Dr. Paul Gaudio of Hartford?

Thank you for your website.

jessrms · Post by **jessrms** » Fri Jan 19, 2007 9:50 pm

Lotemax is not as bad as Pred Forte. When I do use drops, I can wean off Pred Forte very quickly and then I go to Lotemax for a little while. Prednisone eye drops can cause glaucoma and cataracts, so it should be a concern, but my OI has told me that Lotemax is not as damaging as the other steroid drops. The Lotemax also does not affect the pressure in my eye, so I was able to go off of pressure lowering eye drops.

Keep your appointment with Samson, he is good. Saw him once a LONG time ago, but he may not always be very personable. Have a list of questions, and make sure he sits with you long enough to answer them. Don't know the Doc you mentioned in Hartford.

Methotrexate is pretty mild, as far as immune suppressant drugs go. Worked wonders for me, especially when paired with Remicade later on.

Good luck!

Jess (Iritis associated with Juvenile ONset Rheumatoid Arthritis since the age of 4)

Mike Bartolatz · Post by **Mike Bartolatz** » Sat Jan 20, 2007 4:02 pm

if your doctor feels that Methotrexate is appropriate for you, please consider this seriously. please know that there are other drugs that you can use should the side effects cause nausea too. the injectibel form of MTX has fewer side effects as well. there is a discussion of this subject in a sticky note at he beginning of this forum.

Wish you the best,
Mike

tomcat0864 · Post by **tomcat0864** » Sun Jan 21, 2007 8:47 pm

Hi Sad Eyes,

My name is Cathy, I am new here, but not new to this disease, I have had uveitis for 12 years and methotrexate was one of the drugs I have tried.

Unfortunately my body could not tolerate it, and I would feel very sick on just 5mg, so I moved on to another drug. I am now on Humira and loving it! I do not even know I am taking it, I feel no side effects at all, and it has done wonders for my inflammation - none for 10 months now, that is a record for me!

My sister could tolerate it (has same disease), but even 50mg injected did not stop her inflammation until she added Remicade and lowered the mtx gradually. She has not flared in 3 years now, nor has it spread to the other eye.

You just have to try these treatments and find one that is a fit for YOU. Everyone is different, even my sister and I tolerate them differently, so I say, "try it, you might like it!".

If it does make you feel unwell, and this does not improve, it is time to talk to your specialist and move on -there are plenty of options out there, you are just starting out, which is a good place to be.

If you have any questions that your specialist does not answer, this is the place to ask them.

Good-luck and keep us posted as to how it is all going.

Cathy

sadeyes · Post by **sadeyes** » Wed Feb 07, 2007 5:33 pm

Well, I saw Dr. Samson today and I'm glad I did (Thanks Mike). Dr. Samson recommended going on Noproxen 500mg (NSAID Therapy) instead of going on Methotrexate.

I'm presently able to tapper down to one drop of lotemax a day both eyes, but when I completely stop the lotemax I get flare ups. Dr. Samson hopes that after going on noproxen for a month, I might be able tapper off the lotemax for good.

Dr. Samson says my eyes are still in very good shape and no damage at this time. I feel very lucky, I only wish I knew to see an Ocular Immunologist years ago.

I feel like I have renewed hope today and hopefully noproxen will work.

Thanks Mike, Cathy & Jess for your thoughts and insights on iritis treatments.

Thanks again for your website.

Sad Eyes

Mike Bartolatz · Post by **Mike Bartolatz** » Wed Feb 07, 2007 5:38 pm

I am glad that you feel that the visit with a true specialist was worth the cost and effort required to accomplish this potential means of quelling recurrent inflammation in your eyes. you are one of the lucky ones who have resources to choose from.

keep us posted and join in the conversation here. your experience may well help others to implement a Steroid sparing approach to treatment.

Wishing you the very best,
Mike

tomcat0864 · Post by **tomcat0864** » Thu Feb 08, 2007 4:06 am

That is great news!!
I am so glad you got in to see Dr. Samson - I have heard allot of good things about him.
I find that when I am in the care of a true professional that I can trust, I worry far less about my eye care and always leave my appointments in a positive frame of mind no matter what they do or see while I am ther, so I think this will mean allot of piece of mind which should not be underated with this disease.
I predict you will have smooth sailing from her on now that you are in great hands.
Please keep us updated, I would love to see how the NSAIDS help and hear about when you finally get that wonderful news - NO MORE DROPS! I just got it a few weeks ago and am loving it, 2nd time in 12 years - now I just have to stop my dad from complaining about the drops he is taking after his glaucoma surgery - what a big baby he is! At least he knows a bit more first hand what my sister and I have had to go through.

Cathy

sadeyes · Post by **sadeyes** » Tue Oct 02, 2007 11:47 am

Hello again, Iâ€™m presently seeing Dr. Gaudio of Hartford and Iâ€™m on 1200 mg of Advil a day and two drops of Fluorometholone (FML). When ever I taper off the Advil or Fluoromethonlone (FML), I flare up. Do you think itâ€™s that bad to be on Fluorometholone (FML) and Advil indefinitely?

My eyes have improved remarkably. Thanks again.

Mike Bartolatz · Post by **Mike Bartolatz** » Tue Oct 02, 2007 1:06 pm

Ster oid is steroid is steroid. you might still develop complicatons down the road but I can't say this is what will occur with you. a VERY slow taper might help get off the eyedrops. perhaps going from one drop a day to one drop every other day for a week or two and then down to one every three days until you can get down to Zero. I know one person who has to take one drop a week and remains that way for a couple of years now in order to prevent a new bout of iritis. one has to judge the effects on the eye in order to suggest any other treatment. input by Dr Samson in NYC might indicate this as well.

wish you the very best,
Mike

sadeyes · Post by **sadeyes** » Thu Jan 10, 2008 11:18 pm

Well, my Doctor took me off my one drop a day of FML and advil and advised me Methotrexate is the next stop. I haven't had a flare up of Iritis in about a year, but I still have cronic Scleritis. Before putting me on the Methotrexate, my Doctor wanted to try giving me steriod injections with a syringe into eyes... very scary! He said sometimes this clears people of their eye problem (long term). So following his advice and his injections, my eyes have been clear for over a month (with no drops or advil!) which is very exciting!

Mike have you ever heard of this working long term? Thanks again.

Mike Bartolatz · Post by **Mike Bartolatz** » Fri Jan 11, 2008 12:25 pm

just about anything is possible but the scleritis is of concern, I don't understand why you went from Naproxyn to Advil (motrin). I assume the corticosteroid injection would be to tissue SURROUNDING the eye and not into it. Methotrexate would be the next step in a stepladder approach to treatment of the scleritis or other drugs might be tried if it doesn't agree with your tummy for example. often people take a proton pump inhibitor (anti nausea) drug with it as well as iron supplement to help counter hair loss etc.
Advil isn't one of the best choices for an NSAID to try to contol Scleritis.

take care,
Mike

sadeyes · Post by **sadeyes** » Fri Jan 11, 2008 5:39 pm

My Doctor put me on Advil because Naproxyn was upsetting my stomach. I think my Doctor wanted to put me on the least powerful NASID that wouldn't upset my stomach.

Your right the injections weren't directly into my eyes, they were into the tissue surrounding the eye, I misspoke. My eyes have been clear for over a month. Spin the wheel!

Thanks for your insights as always.

Mike Bartolatz · Post by **Mike Bartolatz** » Fri Jan 11, 2008 6:04 pm

Years ago I tried naproxyn, couldn't handle it at all. they then put me on Feldene and I couldn't tolerate it either, then they tried me on Diclofenac (brand Voltaren) and I could take it but finally it too got to my stomach.

often Celebrex or Dolobid are used with uveitis. Celebrex might work better for your scleritis since it is both a cox I and 2 inhibitor.

Scleritis can be more difficult to control than uveitis in some people and it is terribly painful. I know people who have gone through just about all drugs ending up with IntraVeinousImmunoglobulin , IVIG as the think that worked for them.

I can't recall what your underlying autoimmune disease is. is it being controlled?

wish you the best,
Mike