I have WG and i'am now experiencing intermittent twitching under my right eye, has anyone else had this?

I have saddle nose deformity and i'am now experiencing intermittent twitching under my right eye, since last week, not sure if its related to WG or just something else to deal with totally unconnected. I was diagnosed approx 13 years ago.

At present i'am not having any treatment, last Rutixmab was in May, Dr Jayne does not want me to have anymore as he is worried it will destroy my good antibodies. ( I have had many many infusions )

I also feel extreme fatigue at the moment but I do have chronic renal failure

( stage 4 ) caused by congenital abnormality and not WG.

Has anyone else experienced this please ?

7 Replies

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  • Are you still taking steroids? They can cause similar side effects. Perhaps DJ will advise? I had to temporarily stop Rituximab a couple of years ago as my immunoglobulin levels fell but they were reinstated as soon as they'd recovered but I don't have kidney involvement.

    Healthy wishes.

    Martin

  • I have WG and it loves my eyes. My lower lids twitch on and off weekly, sometimes going crazy for a full day straight. My actual eyes are having a nasty painful flare right now, the eye doctor has given me Maxidex drops to use but has said ultimately it's the vasculitis so it's down to the rheumatologist to adjust treatment accordingly. So my steroids were put from 20mg to 40mg, which so far has had little affect along with doubling my Azathioprine. To be honest my only relief is my Solpadol but the rheumatologist said it may take some weeks for the increased medication to work. Just a waiting game for me for now...

  • I have WG, and my right eye twitched constantly for nearly 10months,it drove me insane! It was my top lid. It started when i was in icu. Martin may well be right, if you are on high doses of pred it may be that,as mine stopped when the pred fell below 15mg. All my drs had no idea why it did it, but then to be honest, none of my local drs have a clue about anything!

    WOuld be very interesting to see if there it is WG related

  • Hi Jill, I too have WG since around 1999 but only treated properly by the Renal Team at the QE in Birmingham since Jan'2010. For many years I had a lot of sinus & eye problems then a bleed from my lungs which gave the diagnosis of a very raised ANCA in 2005 leading to WG. The eye probs continued and each time I was prescribed high dose steroids for a few weeks (it was always my left eye and I was diagnosed with posterior scleritis and an eye scan showed an effusion behind that eye during a flare) It was only after advice from John Mills that my GP referred me to Prof Harper. I am on 500mgs Cell-Cept twice a day and have been cut down to 5mgs steroids (have to say since the magic drop to such a low dose my weight has dropped too) What I needed to say that in my case the Eye Specialist at B'ingham City Hosp did not believe such high doses of steroids did any good, she told me to drop the dose and to take my painkillers as and when the eye played up (usually 3am) and it worked after a further 6 weeks the pain went and so did the lower eye twitching in my left eye. So was it the steroids or was it the WG flare causing the eye to twitch? I really don't know Jill as for the moment it has not come back. I wish you well and have to say the fatigue thingy is a daily problem but I can imagine that with your stage of WG it must be exhausting. I wish you well.

  • Many thanks for everyone's replies it's kind of reassuring that other members with WG have experienced this too.

    At present i'am not taking any steroids, have not been on them for approx 5 years. My only treatment has been Rutiximab every 6 months, last one in May. So not sure why my eye is twitching, just have to wait and see what Dr Jayne says next month I suppose.

  • Hi Jill like you i am off steroids (2 years now, hooray!) and have Rituximab every 6 months.my nasal symptoms were very similar to yours and I also have saddle-nose. I occasionally get twitching under my right eye but haved always put it down to the bells palsy i suffered in the early stages of my disease 5 years ago, so your post has made me wonder. i may discuss with my rheumatologist next time

  • Hello

    Im new to all this and i also have a bad twitching in my upper right eye lid..

    I thought it was just me being nervose but its been going on for weeks now .:(

    Glad im not alone

    Im also learning all soprts about this wasculitis because i was thinking i had MS and they had dx me wrong.

    But i also diddent relise that this can mimic MS .

    so the learning does on

    Glad i found this site as very little is known about vasculities x

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