Has anyone suffered with Iritis or Uveitis before the onset of Vasculitis?

[karenJB]

[Dbis22]

This may not help in which case I'm sorry. I did suffer iritis following on from ear infections etc. I was diagnosed AFTER this but, actually, I am pretty sure I had Wegener's 4 months prior ..... just that everyone missed it! Hope this helps in some way!

[Hidden]

Hi KarenJB, I have suffered numerous attacks of posterior scleritis behind my left eye (the sort of wanting to rip my eye out sort of pain... thank goodness for tramadol during these attacks) each time I was treated with a short course of 40mgs daily of steroids. However since being treated for the Wegener's with mycophenalate mofitil 1,000mgs daily since July 2010 and 5mgs prednisolone for 4 months, I have only had 2 attacks and none for the past 5 months. The eye scan showed evidence of WG. My WG seems to concentrate on my eye, ears, nose and joints and hopefully I am now on the right treatment!

[mandijt]

I was diagnosed with episcleritis (after 2 years of receiving treatment for "apparently conjunctivitis without infection") i then had a detached retina with "no cause". This was years before my WG was diagnosed but with many other symptoms too. I have also had uvitis and irisitis and keratitis after the WG - usually only affecting my left eye. I remember being in so much pain at one time i begged my dr to remove my eye! funny thinking back now how mad he must have thought i was.

[Hidden]

Hi mandijt, I too asked the eye Doc if I could have my left eye removed as the pain was quite unbearable when it attacked my eye , always in the early hours of the morning. However tramadol and a cold wet flannel eventually eased it. I do dread it happening again but touch wood it seems to be controlled/kept at bay by my current treatment. The eye Doc said it was one of the worst pains one can suffer and I agree.

[karenJB]

Thanks everyone the reason I was curious was that my vasculitis still hasn't been confirmed and as I have had the above condition for quite a number of years I wondered if this could be related to Vasculitis. I was always prescribed maxidex anti-inflammatory steroid drops. Earlier in the year I was treated for inflammation of the retina and I have a large peice of floating debris in my left eye which I've been told will never go away this was due to the constant use of steroid drops causing scare tissue on the retina.

I have had some pain which feels like someone sticking a pin into my eye or as if it's about to explode so I know exactly how you feel mandijt and Sheila. I have asked my specialist on many occassions and he doesn't seem to think that it's linked.

Karen

[karenJB]

Sorry I meant to say my type of Vasculitis. k

[Hidden]

Hi Karen, just a thought have you had an eye scan? Because both my eye scans showed vasculitis damage in left eye but none in right eye. As the pain attacks settled I presume the fluid behind my eye had been absorbed as the inflammation died down. The scan is similar to those they do on pregnant woman ie cold gel and they rub the doppler thing over the eyeball (so don't wear mascara if you don't want to resemble a panda bear!! Good luck.

[EmmaC]

I had Iritis, I believe it was an onset to vasculitis. Initially they put all my other symptoms (chronic joint and muscle pain, general malaise) down to the Iritis. I had the Maxidex drops too, but I knew something else was wrong when tapering the drops just revealed the Iritis was still there. They gave me a refrigerated pupil dilator to use with Maxidex, to prevent damage to the eye caused by the drops. I still get Iritis now, I'm currently having a flare of it, but the eye doctor says there's not much they can do and it's down to the rheumatologist to adjust my medication accordingly. They usually just send me away with a fresh bottle of Maxidex. With all the steroid medication for vasculitis though, it's pretty pointless. Last time I had an eye check up they told me using Maxidex is like a drop in the ocean compared to my high dosage of Prednisolone. So until my vasculitis is finally put on a leash I guess I'm stuck with it.

[karenJB]

Thanks Emma

Sorry to hear you're struggling with this horrid condition too.

I've suffered with Iritis for about 25 years on and off and like you was just given Maxidex and the dilating drops, it always started with inflammation in my eyes, sinus problems (like something was stuck at the back of my nose/throat) and I always felt really unwell.. When I was finally diagnosed with vasculitis after a Henoch Scholein Purpura rash, severe joint problems, swollen hand and kidney involvement in 2009 I was given Chyclo and Preds, this completely stopped the iritis until I stopped all the treatment last November. Since then I've had several eye problems. I'm just getting over a bout of conjunctivitis, the redness and stickiness has subsided with antibiotic drops but I still have pain in my eyeball. So I guess it's another visit to my eye specialist

How often do you get Iritis?

Karen

[EmmaC]

I've only had it on and off for about a year, it was one of the manifested symptoms that helped my diagnosis. Along with joint and muscle pains all over that were disabling me! It seems to just be permanent now unfortunately. I'm controlling it with painkillers as it just seems to be hiding under my lower eye lids. I can cope with it for now, but sometimes I get deep pain in my eye ball. My eye sight has gone back to being perfect. This may sound odd but when I was first struggling with Iritis I joined an Australian online forum about it, and Yakult drinks were highly recommended to help with Iritis. No idea why. I tried this, buying up myself a batch in Asda and it really seemed to help. But it did give me an upset stomach for a few days while getting used to it! I was reassured in hospital as when the nurses came round with everyone's daily medications, they had the 'low fat' Yakults to hand out free on their trolleys! x

[karenJB]

Great to hear your sight is perfect, it's no fun when iritis causes blurred vision and I know the eye ball pain well. Even though I wear glasses for reading my eye sight varies from day to day. I've tried all sort of things including carrots and blueberries to improve my sight. I've never heard of using Yakult for this condition, thanks for that advice it will definitely be on my shopping list next time I go to the shops, i'll let you know how I get on. x