After seeing the specialist...

The Arty One · Post by **The Arty One** » Fri Nov 07, 2008 1:32 pm

Hello all, if you want to read my history please see my post called "I've got it again!". In brief I have had Iritis for a year now (with a few months of peace in there) I also had a long running episode for around four years in my teens. Both eyes are affected though it started just in my left eye second time round. It is anterior Uveitis that I have.

One Tuesday I had my much awaited appointment with Dr Philip Murray at the Birmingham Eye Centre. I was looking forward to having a specialist see me, and I loved the opportunity to discuss my condition with someone who took their time to listen and he explained everything about the eye and Uveitis. He checked both eyes and came to the conclusion that a have very low 'grumbling' inflammation. There were three cells in each eye and he recommended me to continue with Maxidex once every other day. Dr Murray doesn't believe that steriod drops can cause cataracts, though they may play a part in some cases. He felt with me it was better to continue on a low dose approach rather than risk stopping and finding it back with avengeance.

I must admit I was a little disappointed as I had high hopes of being offered a steriod free approach but I am happy that my eye pressure is within normal guidelines and the back of my eyes seem healthy though he could see a slight haze at the back of both eyes. Apparently this could be normal (he's not seen me before so has nothing to compare it to), or it could be an early sign of cataracts forming. Dr Murray pointed out cataracts are treatable but blindness from out of control inflammation isn't. So I guess we had to choose the lesser of two evils.

In terms of Dr Murray as a specialist I thought he was brilliant at explaining things without being patronising. He also was vey nice personally showing me where I could get food while we waited for my pupils to dilate. He was concerned that my usual hospital discharged me before I stopped treatment (I was on drops every other day). He is going to write to them to recommend I am seen at regular intervals to monitor the effect of the drops. He did also apologise for not being to tell me what causes these flares but he did say from what I said it wasn't viral. It could be as a result of mixed connective tissue disease but a link is quite unusual apparently.

I would suggest you ask your hospital and GP to send your notes to the specialist. I stupidly assumed this was normal protocal and so had to go through my history in person with Dr Murraywhich is not ideal and he may have spotted something in my notes which I have forgotten about.

I am rather run down again with shooting muscular pains down my back and am trying to not feel too sorry for myself. Luckily I can lie in now the weekend is here and I don't have to worry about getting to work early. I hope you are well and in good health, and if you have Uveitis it disappears for good!

Mike Bartolatz · Post by **Mike Bartolatz** » Fri Nov 07, 2008 3:18 pm

well I must say you need to get your General practice doctor involved in trying to figure out if 'mixed connective tissue disease' is the cause of your uveitis and myriad of other symptoms. there are specific markers called Anti Nuclear Antibodies that appear when Mixed Connective Tissue Disease is present. this is a simple blood test. if postitive then additional specfic markers for things like Sjogren's syndrome, Systemic Lupus Erythematosus, Scleroderma, relapsing polychondritis etc can be looked for
why your muscles are constantly spasming should also be looked into. many of the above things can be linked to muscle pain of varying types as well as spasms. Multiple sclerosis can be checked for as well as can Fibroymalgia.

Evidence here in the USA suggests a DIRECT LINK between corticosteroid use and cataracts. you can ask the Very BEST Uveitis specialist about this at the ASK DR FOSTER forum of http://www.uveitis.org. all forms of corticosteroids can lead to cataract formation as well as to Elevated Intra Ocular Pressure. if oral corticosteroids are needed, they can also induce type II diabetes and bone loss as well as cataracts and glaucoma.

you can do a google search of the long term consequences of corticosteroids and these thing will be listed.

if you wish input from another EXCELLENT ocular immunologist, contact Mr William Ayliffe in London. In my lay opinion he is the best in the UK.

wish you the very best,
Mike

mtbargeman · Post by **mtbargeman** » Fri Nov 07, 2008 3:55 pm

Arty One-

Hi! and welcome to our group! I agree with Mike about Dr. Ayliffe. The idea that steroids aren't related to catarcts is scary to me. He IS right about blindness from cataracts being curable, but NOT from inflammation. ( Wish I hadn't learned that one the hard way. Well.) Anyway definitely suggest you looking into getting an appointment with Mr. Ayliffe.

Bright Blessings,

Mary

The Arty One · Post by **The Arty One** » Sat Nov 08, 2008 11:05 am

Thank you both for your replies. I have used the Dr Foster forum (just waiting for a response now) and will also pester my GP for more tests. I may also ask to see my rheumatologist again as my mctd seems to be worse as I was in good health when I saw him in the summer.

Mike Bartolatz · Post by **Mike Bartolatz** » Sat Nov 08, 2008 6:33 pm

is your rheumatologist aware of the link between MCTD and uveitis by way of things like Systemic Lupus Erythematosus, the IL23R gene. the HLA B27 gene and the ARTS1 gene? (see article topic "one gene four autoimmune diseases' in this forum in a sticky note.) possibly Multiple Sclerosis as well.
see article on early intervention in RA reduces possible long term complications such as cancer of the lymphnodes. See article that I wrote with links to 'Safety and efficacy of DMARD drugs' you could print this stuff out and provide them to your doctors.

also note treatment algorithms at http://www.uveitis.org along with articles there on Mixed Connective tissue disease, Multiple Autoimmune disease. systemic lupus erythematosus and Sjogren's syndrome

for your information if Plaqeunil is suggested for treatment, it works very well for Mixed connective tissue diseases but IT WILL NOT work for uveitis. Methotrexate, Cellcept, Remicade, Humira, etc (not enbrel) work well for control of many of the connective tissue diseases AND UVEITIS.

Mary,
Cataracts related to Uveitis are not easily removed and intra ocular lenses are sucessfully implanted only about 85% of the time VS 95% of the time in those without uveitis. things like Xibrom eyedrops have increased this to some degree IF the doctors are aware of this and use Xibrom rather than just corticosteroids or other NSAID eyedrops.

Wish you the very best,
Mike

Mike Bartolatz · Post by **Mike Bartolatz** » Sat Nov 08, 2008 7:00 pm

http://askcsf.yuku.com/topic/1427/t/Any ... iated.html

above is a link to the Response By Dr C Stephen Foster at the Ocular Immunology and Uveitis Foundation, Cambridge, MA USA to the question posed by the Arty One.

although it is a short and to the point reply, it goes along with what I have indicated as well as what Mary has indicated regarding treatment using MODERN methods.

he too indicates the need to See Mr William Ayliffe in London.

Mike

Mike Bartolatz · Post by **Mike Bartolatz** » Sat Nov 08, 2008 10:35 pm

http://www.iritis.org/forum/viewtopic.p ... highlight=

steroid sparing treatment within 3 years of onset of uveitis has lower risk of cataract and glaucoma from STEROIDS.

mike

Mike Bartolatz · Post by **Mike Bartolatz** » Sat Nov 08, 2008 10:41 pm

http://www.googlesyndicatedsearch.com/u ... gle+Search

safety of chemotherapeutic immunomodulation for uveitis.

Professor Murray is a member of the International Uveitis
Society which espouses the treatment above. I cannot understand why he would tell you to continue with topical steroid treatment and that the Mixed Connective tissue diseases rarely occur with uveitis. he hasn't been doing his reading. although by far Ideopathic, autoimmune related uveitis is the most common form of the disease, the literature is replete with RF positive disease, ANA positive disease and in many instances not treating with chemotherapeutic drugs leads to greater mortality and morbity.

mike

Mike Bartolatz · Post by **Mike Bartolatz** » Sat Nov 08, 2008 10:42 pm

http://www.iritis.org/forum/viewtopic.php?t=54

Mike Bartolatz · Post by **Mike Bartolatz** » Sat Nov 08, 2008 10:43 pm

http://www.iritis.org/forum/viewtopic.php?t=2690

safety and efficacy of chemotherapeutic Drugs.

Mike Bartolatz · Post by **Mike Bartolatz** » Sat Nov 08, 2008 10:46 pm

http://www.uveitis.org/kids/OIDGuide.htm

ocular inflammatory disease: A Guide for all ages

you might want to print this PDF file out and SHOW IT TO YOUR DOCTORS. maybe they will learn something.

mike

Mike Bartolatz · Post by **Mike Bartolatz** » Sat Nov 08, 2008 10:53 pm

Treatment Algorithms for various forms of uveitis:

http://www.uveitis.org/medical/treatment/default.html