Vasculitis

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Vasculitis

Postby Tammie » Wed Apr 01, 2009 12:38 am

Good evening!

I met with a new doc today here in Phoenix. After meeting with my rheumatologist a few weeks ago he suggested that I follow-up with Mandi Conway with Associated Retinal Consultants. He has a few patients in common with her that he has treated for iritis. I'd remembered seeing her name in one of your forums so I thought she would be a good fit for the eye care I need here in Arizona. She is fairly new to the valley, came from Tucson (Univ of Ariz) and before that from New Orleans. Here is her bio: http://www.associatedretinaconsultants. ... conway.htm She was very glad to hear about my visit with Dr. Vitale, and is aware of his expertise as well as Dr. Foster. She did a very thorough history, reviewed my medical notes, and did a comprehensive exam. I was at the office for over 3 hours! She did discover an area of vasulitis in my rt retina. She says that this is not associated with HLA-B27 or non-granulomatous uveitis, that it is more indicative of another autoimmune pathway, possible Lupus. She took different types of "pictures" of my retina so that she can document a baseline and see how my eye changes as flares occur... she said that she could see a cataract forming on my right eye, which is something that my other opthamologist kept telling me was bound to happen after so much inflammation and cortico-steroid treatment. (The double-edged sword!)

She says to get on Celebrex and soon as possible. I'm just going to pay for the dang stuff myself (out of my HSA), at least a month's supply, in the morning. I'm tired of jumping through hoops with the infuriating insurance company. Dr. Vitale's office and my rheumatologist both sent more paperwork to them last week to appeal the denial... but I'm tired of waiting.

Here's my question for the day: if there is evidence of vasculitis in my eye, do I need to seek further examination for other system or organ involvement? In other words if the vessels in my eye have been affected is there a chance that there are vessels in other organs of my body that might be affected as well? I guess the plot thickens!?!

Thanks, Mike! Hope you have a good night,
Tammie
Tammie in Arizona
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Re: Vasculitis

Postby Mike Bartolatz » Wed Apr 01, 2009 9:06 am

Tammie,
yes you should start looking for underlying autoimmune disease that can present with vasculitis and uveitis,
specific antibody tests should be done now for a baseline because these numbers can change over time with treatment. if immunomodulation is needed, these markers can disappear in time and return so being 'negative' really means that your underlying disease is controlled.
if Systemic Lupus Erythematosus is suspect, SOME of the markers to look for are: anti RO (SSA) anti LA (SSB), Smith antibody, and coagulant factors. there are articles on this topic here in our Releated conditions forum as well as in the other information forums. there are a couple of articles on Vasculitis which indicate other connective tissue disease processes that present with vasculitis of the retina as this is a very significant finding.
I'll get some links together for you and will post them. then print them out and take them to your Primary Care Physician or rheumatologist for consideration.
Thanks for the doctor's link too as I can now use it for others in your area to consider. your feedback on her willingness to work with DR Vitale is very helpful and it is also good to know that she is aware of who Dr Foster is in the World of Ocular Inflammatory Disease.

wishing you the very best,
Mike
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Re: Vasculitis

Postby Mike Bartolatz » Wed Apr 01, 2009 9:18 am

http://www.uveitis.org/medical/articles ... ascul.html
article by Doctor Foster on the Signficance of Vasculitis along with some of the Related conditions which also have uveitis as a component

http://cme.medscape.com/viewarticle/497769_1

this one goes a bit more in detail but it is dated (4 years old)

http://msj.sagepub.com/cgi/content/abstract/14/8/1061

neuro myelitis optica is also known as Devic's disease, optical spinal MS
this condition can appear in Multiple sclerosis, Systemic Lupus Erythematosus and Sjogren's syndrome.
the above abstract indicates that measurement of NMO IgG antibody can indicate disease activity as well as control by immunosuppression

http://emedicine.medscape.com/article/335414-overview
amyloidosis can appear in SLE and other connective tissue diesases and HLA B27 related diseases
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Re: Vasculitis

Postby Tammie » Wed Apr 01, 2009 11:22 am

THANK YOU! THANK YOU! THANK YOU!

I really appreciate you getting these articles together for me! Your support is appreciated beyond words!

I also wanted to add that Dr. Mandi Conway also mentioned treating a patient of Dr. Levinson's as well... It's good to know that I have someone close that also understands this stuff as well as having Dr. Vitale to fall back on.

Take Care,
Tammie
Tammie in Arizona
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Re: Vasculitis

Postby Mike Bartolatz » Wed Apr 01, 2009 11:42 am

know I'll help in any way I can for you lady. you have been through one hell of allot getting to care you deserve.
one comment though, retinal vasculitis may well change treatment from Celebrex to immunomodulation with DMARD and Biological response modifier drugs such as Remicade, humira etc.

moving on to Cellcept or Methotrexate might be advised rather than use of Celebrex as it won't help with this new complicaton.

you might ask DR Conway to inform DR Vitale of the presence of vascularization so that he can possibly suggest which route to take in control of this. down the road, Avastin injection into the eye might be needed but it is only a temporary fix which needs repeated use in many cases.

I'm not a doctor as you well know and am speaking in general terms about options.

Wish you the best,
Mike
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