Is anyone suffering with posterior Uveitus, retina vein occlusions and maccular edema?

Hi all,

All my Bechet manifestations seem to be focused on my one eye(no pun intended) at the moment. I Was diagnosed in July and have been plagued with blurred vision ever since. the vision in my right eye has deteriorated dramatically since the end of last week and have been in and out of opthamologist office ever sinbce for tests and treatments. So far I have been prescribed steroids, I have had steroids injection in to eyelid last week and had a steroid IV infusion this morning. I will be back in next week for a series of injections into the eye (ouch)I will be starting Enbrel in the next week or so, have just had quanteferon blood test and chest scan (for TB) completed as pre requisite.

I was just wondering if others are experiencing similar symptoms with there eyes, if so how are you finding it?what treatments have have you found to work and what did you think of the actual injection into the eye.

Thanks

Darran

5 Replies

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  • Hello Darran, I realise you are asking for our experiences and opinions but I thought I would kick things off by saying it might help you to read through a couple of other threads that mention some of the things you are asking about (apologies if you have already seen them)

    behcetsuk.healthunlocked.co...

    behcetsuk.healthunlocked.co...

    Also, the Society have a factsheet you may find useful (again, apologies if you have seen it)

    behcets.org.uk/Documents/we...

    I use FML drops (steroid) hylo forte (lubricant) in the daytime and Optive (lubricant) at night. I have oral steroid and/or increase in dosage and frequency of FML when I get uveitis. Sometimes I have IV steroid or IV injection. I've never had an injection into the eye but I know someone who has them regularly and although of course she doesn't like them, she says they are not too bad now that she is used to them - the thought of it and being able to see the needle coming towards her are worse than the injection itself in her experience. She has also had two operations and now has a flexible stitch in one eye so that pressure can be altered by adjusting the stitch when necessary. She also suffers from optic neuritis.

    My vision is very poor and my eyes painful/uncomfortable for a variety of reasons and it won't help you by posting about them all, but it has been the same for quite a while now, ie, no further deterioration overall.

  • Thanks for taking the time to answer and giving out great information- as you guessed I have looked at all the fact sheets on the society site and read other threads but was good to read back over the ones you included in your reply. Most people have been telling me that the injection in to the eye is not so bad so have taken comfort from that- as long as it helps I will put up with it.

  • Hi Darran,I have retinal vasculitis and intermediate uveitis My initial treatment was steroids and immunsuppressents.For the last three years I've been on Interferon Alpha which has kept my eyes quiet.

  • thanks, I got confirmation yesterday that I am to commence with (Etanercept)Enbrel this week so fingers crossed it will stabilise things.

  • That's good news - let us know how you get on.

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