Reoccurance...and Uveitis in Japan.

[Nikorusama]

So I made it to Japan and I had an appointment with a specialist in Uveitis, although I was on Oral steroids and had managed to curr the CME and there was no active inflamation by the time I reached Japan. I was given a programme of oral steroids whilst in the UK, 40mg per day for 2 weeks, them 30mg for a further week then 20mg for a week and finally 20mg every other day for 1 week. I arrived in Japan during the last week and the doctor there wanted me to take an extra week on 20mg every other day and then wanted to reduce more gradually rather than just stop.

In my infinite wisdom and because I didn't have any problems with my CME and uveitis reoccuring straight away the first time I had an attack, I asked just to stop the steroids because my UK doctor had suggested that and also I was getting awful side effects. The Japanese doctor agreed to let me stop.

All was good for around 3 days and now I think my CME is coming back. I can always tell before they can detect it on the OCT so I'll have to wait until it gets a little worse so they can detect it.

I'm just fed up with it. Also I'm really wondering about an underlying cause. Can it just be idiopathic? All my extra tests have been negative but everytime I get a flare up with my eye, I get awful pressure pain around my bum and hips when sitting down or sleeping, I went for X-rays and they were normal too...they said I could have MRI but I didn't want to waste their time. I don't know if it is just coincidental.

Now I can't and won't have a sub tenons injection again, but I really don't want to be treated with steroids long term. The doctor said we can discuss other treatment methods if I get a Reoccurance, I just didn't think I would get it so soon.

I'd like to start a family soon and I'm worried about the medications I might need to take, not to mention if I have an in diagnosed underlying condition that could be passed to my child. Any advice?

Thanks for reading! Looks like I'm going to be a long term member of this forum.

Nicole

[Mike Bartolatz]

Nicole,
with all the things tested for so far I would suggest that they do ANA screening, and perhaps a gallium scan of your pelvis and your chest to rule out a few things. often a scan is needed to be performed to rule out Sarcoidosis which is frequently tested for with a serum ACE test but this test is NOT indicative of sarcoidosis. Xray will not show early signs of lung involvement if present for either ankylosing spondylitis or sarcoidosis which can cause problems of arthritis like pain and neuropathy. your spine should also be checked for granulomas as this can mimick arthritis and MS for example.
are you Japanese? if yes there are other things to test for besides Sarcoidosis: Behcet's disease for example through the HLA B51 gene.

with CME present you should strongly consider DMARD drugs such as Methotrexate or Cellcept and perhaps an injection of Avastin into the vitreous as this can lead to retinal detachment and epiretinal membrane formation over the site of the CME. (I have this in both eyes). the DMARD drugs can also help to prevent progression to vascularization of the retina as can the AVASTIN injection.

you might also consider use of XIBROM instead of the current NSAID that you are now using for the CME.

posterior segment involvement only treated with corticosteroids will lead to a situation such as that which now have with the CME which can cause blinding consequences. Only DMARD drugs and other classes of meds can get you to durable remission.

additionally a VERY SLOW taper off of steroids works best to help prevent re occurance of uveitis in most individuals. some even require a drop a week of pred forte for example long term.

I understand your wants regarding children but wouldn't it be better to wait and be able so see your kids rather than lose significant vision? will three years wait to get you remission make you unable to have children? if you lose vision you won't be able to use a microscope either.

just my thoughts,
mike