Could this be a flare?

[ISABEL12]

I have a swelling between my eye and cheekbone, been to the doctors don't know how many times and they keep giving me antibiotics but they dont seem to be clearing it.

I feel stupid asking this but could this be my WG flaring up? Tried to get my ENT consultant but hes on holiday to the 28th Feb.

Do you thnk i should contact my repiratory doc who first diagnosed me with WG's the only thing is he told me at my last appt in dec that your eyes, ears and sinuses are not life threatening.

Can anyone advise me please

[PatriciaAnn]

Is it a flare or isn't it? We all ask ourselves that questions when anything starts to go wrong. The thing is that with WG we can't be sure. Is your ENT consultant a one-man-band or does he have ENT colleagues you might be able to see?

Has your GP suggested that maybe you up your Prednisolone for a little while to see if that might work. I'm not saying to do that, I'm not a doctor, but it is something you could ask.

Why not contact the respiratory doctor. Your eyes, ears and sinuses in themselves may not be life-threatening, but you don't want some added infection really making you flare because that could be.

Patricia.

[ISABEL12 in reply to PatriciaAnn]

Thanks Patricia,

I'm going to phone in the morning and see what they say. My GP said the hospital would probably increase steriods to sort problem he thought it was connected to WG's.

[John_Mills Volunteer]

Hi Isabel,

I don't have WG but listen to people who have WG on a daily basis and I live with John who has had WG for 11 years now.

All I can say is that if you have a problem and it is scaring you or making you uneasy then go and get this problem checked out as soon as possible. It does not matter if it is not a flare and can be treated in a simple way but it is better to be on the safe side. You just might need a different antibiotic. John has had 2 UTI's, chest infection and tonsillitis this last few weeks one after the other, 4 different antibiotics until they found the one that worked. We were afraid his WG was very active again but as it turned out it was not his WG, but the on going infections can be just as serious, and cause damage and very serious health problems, believe me.

As for your respiratory doctor saying your ears, nose and sinus's are not life threatening is probably true, but the damage that it can cause can leave you with severe disabilities that can/could be avoided. eg: deafness, saddle nose and a hole in the septum. I have found with experience, is that, if you are concerned about yourself and how you are feeling then talk to your consultant. I presume your respiratory consultant has lots of experience of vasculitis. Don't be fobbed off, it is your health and your body.

You can talk to John if you feel you can, he maybe able to help in a practical way.

All the best

Susan x

[ISABEL12 in reply to John_Mills]

Thanks Susan,

I am already deaf in my left ear and partially deaf in the right ear, I have hearing aid now. I also have saddle nose deformity and holes in the septum of my nose caused by WG's. I also had 4 holes in my lungs which have now healed but are badly scarred which leaves me very breathless.

Probably this is how i'm scared when I catch anything new, no doubt i'm overreacting!!

[John_Mills Volunteer in reply to ISABEL12]

I am sorry the WG has affected you so much. I think you have every right to overreact. John also has scarred lungs and also gets very breathless even on the shortest walks and never walks up hills. John was lucky his consultant recognised diagnosed and treated J's WG quickly so John has no damage to the ears, nose, sinus or throat. BUT, John has suffered a DVT due to the WG in 2007 and 2 carcinoma's of the bladder one in 2008 and one this last year, due to the long term use of Cyclophos though. So being on the safe side is better than not doing anything, so do go and see your consultant soon

Take care

Susan

[lisa-ranyell Vasculitis UK Volunteer]

Hi Isabel, your WG symptoms sound very similar to mine. I have had similar pain and swelling around eye/cheekbones over last year. Twice it was sinusitis which cleared up with antibiotics but once it turned out to be a flare and this was only confirmed by ENT so see them ASAP. That time I felt really ill/fatigued as well as in pain so that was how I differentiated. I am receiving rituximab infusions every 6 months anyway so did not need steroids but this may be different for you. Hope this helps. Best wishes - Lisa

[Llinos]

Hi Isabel, We could be twins as you sound just like me lol although Proff Jones in Notts fixed my nose last year( although I look normal now people have no understand how ill I have been!!). I also wear bilateral aids and have lung damage.

Am just recovering from my 2nd nasty chest infection in 2 months and have had a cxr and routine bloods done just to check everything is ok. You do get quite scared when something happens.

Look after yourself

Llinos