Trying to find a cause

[roobie]

Hi, I'm a 32 year old female from the UK who has recently been diagnosed with bilateral uveitis, retinal vasculitis and retinal pigment epilithelium detachment. They say that the vessels at the back of my eyes are leaking, some are blocked and I have some small hemorrhages. Apart from my eyes I'm in pretty good health. So far my consultant has done a fluorescein angiography, OCT scan, chest x-ray (which was clear) and some blood tests (not sure which ones) which were fine. The only thing that has come back so far is my TB skin test was mildly positive (not sure if I've ever had the vaccination) and currently waiting for the result of the TB blood test. The only treatment I've had so far is steriod eye drops for the anterior inflammation. Is there anything in particular I should be asking the doctor, whether it be information or whether certain tests have been done / could be done? Many thanks.

[Mike Bartolatz]

please insist on a consultation with an Ocular Immunologist. there are several of them in the UK. Professor william Ayliffe in London is the best and is whom I would seek a consultation with if I were you. his contact information and that of others in the UK can be found at http://www.uveitis.org in the PATIENT information section of the site on the INTERNATIONAL specialist list.

the vascularization of the retina is very probelmatic and can be associated with many things including TB. I don't know if drugs to counter vascularization would be of benefit when TB is suspect however. when it is not linked to a pathogen, injections of avasatin or other vascular endothelial growth factor 2 drugs are used to help to stop this potenitally blinding consequence of the disease process. if it isn't linked to TB, then Avastin would be appropriate along with DMARD drugs alone or in combination with others to stop the posterior segment inflammation causing all of this. the steroid eyedrops will only treat the anterior segment inflammation but if it is a pathogen other drugs will be needed depending on what is the underlying cause. some respond to various antibiotics. if the pathogen is inside the eye, the steroids can allow them to go crazy and this is probably why you are not on oral or injectible steroids at this time.
Please contact professor ayliffe and pay out of pocket if necessary. he takes patients privately and it can take a long time to get a referral through the NHS. he does take NHS patients. your primary care physician can refer to him and get the approval for possible out of network visits approved (I have seen this done in the past). I also suggest that you do a search on 'oliviasvision.org' and join that support group in the UK, the members there can help you to maneuver through the NHS system as they had to do this to get proper and modern treatment of their complex forms of Ocular Inflammatory Disease.
You can Email Professor Ayliffe with information on your situation and he can expedite your appointment, I know that he will also work with your local doctors after you have seen him as a patient.

I hope this helps,
Mike

[Mike Bartolatz]

http://www.oliviasvision.org/

[roobie]

Many thanks for your reply, that's really helpful. I'm back at the hospital in a few weeks so I will have a chat to my consultant about it.

[Mike Bartolatz]

go to http://www.oliviasvision.org there in the UK, they can help you maneuver through the Uk healthcare system. the site has the top ocular immunologists in the UK on their board. it was developed by a mom of a kid with iritis and she wanted to make a difference for those with uveitis and other ocular inflammatory disease processes. I know members there for over 10 years now who had to do the leg work to get to specialists like professor Andrew Dick in Bristol and Professor Ayliffe in London.

Wish you the very best,
Mike

[roobie]

I've been for my latest appointment and the TB test was negative - along with all the other tests they did - so they have diagnosed me with primary retinal vasculitis. The consultant would like me to start a course of Cellcept, which would broadly seem to agree with the advice you gave. The side effects seem a bit scary, but not as scary as losing your vision so I'm willing to try anything. Thanks again for your help and advice, much appreciated.

[Mike Bartolatz]

Ask the doctor for a prescription for a 'proton pump' inhibitor drug if you have stomach problems after teh second dose. often you will have this after the first dose but after the second things settle down. Remember that NO drug should make you sicker than you already are and there are many drugs of various classes to try. did he suggest an Avastin injection for the retinopathy?

wishing you quiet eyes,
mike

[roobie]

Thanks for the advice Mike, very helpful.

He didn't mention Avastin; what does that do?

[Mike Bartolatz]

avastin stops new blood vessel growth and treats Cystoid macular Oedema (edema in the USA). it is combined with a small amount of short acting corticosteroids (always use short acting steroid injected as it can raise pressure inside your eyes). long acting caused my peripheral vision loss for example.

then the drugs like Cellcept are used to treat the inflammation causing the new blood vessel growth. gotta use both modes of treatment to stop the damage permanently. Ayliffe knows about this and uses it on his patients from time to time.
google 'avastin and neovascularization of the retina and Cystoid macular Edema oedema' you should get scholarly abstracts with this search to show your primary care doctor so you can get an NHS referral.

have a great weekend,
Mike

PS: I will be out of computer and cell coverage for the next few days in a remote part of my State at a resort to celebrate my wife's 63rd birthday hiking in a Rain Forest in Olympic National Park here in Washington State. so I cannot respond to any posts until Monday. msb