Advice please

[Main1234]

Hi my husbands GPA is now quiet (don't like remission) after 6 cycles and high steroids. His lungs are now clear and at the moment he has no other issues. He has started on AZA and his steroids are reducing slowly. How will we know if he just has a cold or a flare?? I am guessing if he has a flare the symptoms may be the same as when he was diagnosed, is this correct ? I am concerned with winter coming that we will miss the signs. When do we need to see a doctor for antibiotics etc. New to this disease any help/ advice would be appreciated. He is well at the moment thank goodness.

Thank you all

[Hidden]

Hi,

As a general rule most patients flare with the symptoms they had when they became unwell at first ( but not everyone does! ).

Part of the battle is being aware that you can flare and realising that the symptoms of infection and flare can be similar.

What works for me is having a really good relationship with my GP surgery. If I feel unwell then I can phone them and at the very least speak to a Dr on the phone that day. I always stress on the phone that I am immunosupressed and am worried about the possibility of infection.

I also have the number of the Rheumatology nurse specialist who I can phone with concerns and they can check with my Consultant if I need to be seen or give me advice themselves.

I do feel that things get easier as time goes on, we get to become experts in our own disease and how it affects us, things that would have sent me running to the Dr's 4 years ago I now know how to manage!

Just remember that there is no such thing as a stupid question and with Vasculitis it's better to err on the side of caution when it comes to symptoms.

Hope that helps

Best wishes

Lynn

[Main1234 in reply to Hidden]

Thank you as always excellent clear response .

Not sure I would manage without this support

[thecatsathome2]

Hello Main, the sindrom has in own symptoms don't ignore them. He will learn to recognize just like my boyfriend does. However, if unsure call your doctor asap

[danerd1960]

I have GPA also - it has been a year & I also worry I won’t recognize a flare!

[Main1234 in reply to danerd1960]

It's a worry is'nt it. How have you been since your diagnosis ?

Guess it's being aware of your own body and checking out any changes, better to be safe than have a nasty relapse.

What treatment are you on now? My husband has just started Aza and reducing his steroids .