Anyone dealing with uveitis/retinal vasculitis? Please Help!

[teddy]

Hi there,

I suffer from uveitis for 11 years now. I have been on steroid drops the whole time and even though I get severe atacks once/twice a year and each time they worsen. In addition I also have vasculitis now and the doctors I see have me start taking high dosage of steroid tablets. The recovery is super slow and they insist I start taking immunosupressants as well. Does anyone have experience with this disease? Have you tried AIP and has it helped? ANY information would be highly appreciated! God Bless!

[suew77]

Hi,
I just joined this forum and your post is the first one I see. Yes, I have/had Uveitis. I had an attack 4 yrs. ago which wasn't treated correctly, or at all, in the ER and by the time I saw a retinal specialist I had lost most of the sight in my left eye. I wish I had sued those doctors!!! He said I had a Retinal Occlusion, which was unfortunately in my good eye. My right eye is lazy. I had a recent flare this past December, got to my dr. quickly and was able to keep from losing more eyesight. I'm having such poor eyesight I wasn't even sure it was a flare. The first time it started out like a strange migraine aura. My dr thinks the occlusion was probably caused by migraine. A Final determination wasn't ever made, even though I saw eight doctors at the optometry school at UCSF. These doctors know nothing!! I just got off the prednisone about three months ago. I was on it for four years, with a very low-dose the last year.

I was tested for Vasculitis at the time and it was negative, but I get this strange pressure, throbbing and heat randomly in my temples and in my legs after walking. I also have Fibromyalgia and Neuropathy, amongst other things. My sister-in-law has Uveitis, too. Mine was in the back of my eye, her's is in the front and looks terrible, poor thing!

All I can think of to tell you is stay on the prednisone until your inflammation markers go down, then slowly taper off. There were several times I had to go back up slightly on my dose, wait for the inflammation to go down, then proceed reducing it. The 1st time the drs weren't sure if it was possibly GCA; Giant Cell Arteritis. The biopsy was negative, but that happens in 30% of cases. I feel for you; prednisone makes me crazy!!! An awful, but necessary evil. If you have a particular question, I'd be happy to give you my 2 cents on the matter. Blessings!

[teddy]

Hello Suew!

Thank you so much for your sharing your experience with me and I am so sorry to hear that you've gone through all that! It's , I know it.
I understand that you were on steroids for four years! Did you have a problem with blood sugar or any other markers? Can you tell me approximately what your doses were? I started with 60 mg per day, no I am on 15mg and unable to go down to 12.5mg because I get too many flashes. I am going to see one of the top specialists in London tomorrow for another angiography and Moorfields and see if there is progress. I am also concerned about this immunosuppressant they want to put me on and wonder if you know someone who's taken it? It is called Azathioprine.

I am coming to San Francisco on 2nd of June. Can you recommend a good uveitis specialist?
Thank you so much again. All the best to you!