I am in Limbo don't know what to do next ..

[boozum]

I have caught another virus a rotten head cold sore through coughing up phlegm (sorry) and my blood results came back normal but because of my perforated nasal septum am I prone to a lot of infections now ? Next appointment to ENT is December . Any advice x

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It depends on what blood tests were done and even then, active disease can still be present when markers are in the normal range. The two to check are elevated CRP (usually a sign of an inflammatory process) and your ANCA levels. The latter can show positive and you feel okay but in most vasculitis patients who are positive it's an indicator of activity. Have you had a specific diagnosis and treatment to date?

Healthy wishes

Martin

[boozum]

Hi Martin thanks for your reply my blood test were for FBC ,ESR , Serum ?, ACE and ANCA , these confirm back via ENT department as normal but I think I have an appointment with in December may have to chase them up to confirm this and what to do next just fed up getting viruses many thanks x

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Unbeknown to most, almost all blood test results are completed within a day, if not within hours (with the exception of anything ANCA and anything else which is grown in a culture). If fortunate to be able to log into my results and check them for myself and this also means I can immediately see trends and changes, which are often the best indicator we have. I'd certainly not wait for another month and if it were me I'd be demanding the results over the phone today. If you're in any doubt, ask them to repeat the tests as changes can happen within a matter of days

Do you know for sure if it's a virus causing your head cold? It seems more likely to be an infection or disease activity to produce the symptoms you've described but I'm still unaware what type of Vasculitis you've been diagnosed with or what treatment regime you're on?

From personal experience, don't assume every specialist you encounter knows what they are doing. Unfortunately, 'doctor doesn't always know best' and my advice would be to take control of your condition and manage as many aspects of it yourself that you possibly can. Don't be afraid to push and cajole people to get what you need. It's easy to slip off the radar the moment you walk out of a consultation and that slip can have devastating consequences.

I appreciate the last thing you want is to have to expend lots of energy when you feel like crap but sometimes, needs must to get what you need. I'm just speaking from experience and having seen patients suffer because they assumed someone else was looking out for them.

Let us know how you get on?

Healthy wishes.

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Hello Boozum,

All I can say is that although I have WG/GPA I am so aware of nasal problems as I do have probs in that department but no perforations. I feel that you are very susceptible to infections because a lot of bugs live up our noses (and the fact you have a hole in your septum makes it worse) The phlegm etc could be caused by post-nasal dripping and that is unpleasant as it makes your breath smell too. Either you need some specific antibiotics to treat this ...have you had a nasal swab and sputum sent off?? (I don't think this is a virus but a bacterial infection perhaps Staphloccus Aureous amongst others) Please see your GP or ask for earlier appointment with ENT as such infections in a lowered immune resistance can become serious if you are on treatment. Take care and be pro-active. S&J