Chest infection

[Webbyj]

Hi. I think I have a chest infection and am worried that it will cause my MPA to flare? This is the first time I have felt unwell since remission in October 2017. Am I worrying unnecessarily ? GP appointment at 4.50. So scared of relapsing 😫

[jgold]

My vasculitis consultant is insistent that if I am ever unwell (apart from trivial, short-lived and obvious things such as a cold) that I should tell him straight away. He wil then decide if he wants to see me at his next weekly clinic, or alternatively give some other advice.

Therefore unless your GP concludes that it's something quite trivial and can be cured rapidly, I suggest you tell your vasculitis consultant straight away.

[Webbyj]

Ok thank you. Luckily I have a routine appointment with my nephrologist on Friday. Fingers crossed all will be ok.

[Wizzi in reply to Webbyj]

Good luck and let us know please... My son (13 years old) has been having MPA for two years now and in this days he has cold and fever. Also his GP told us to wait until to get worry and call the the nephrologist only if things get worse instead of get better in three days.

I'm so scared for releapsing most of time and even without realistic evidences, even when he is good but this is another kind of problem relative to my

anxiety and to the schock after the diagnosis.

[Webbyj in reply to Wizzi]

Yes it is a worry and a terrible shock. Just remember that your son will be continually monitored and treated accordingly. Try not to worry too much. This is the first time I have had a cold or anything since my diagnosis. The medication has its own side effects but at the end of the day we can’t live without them. Take care x

[tiachibird]

I to am MPA. My chest infection became pneumonia on two occasions, so dont neglect it.

[Webbyj in reply to tiachibird]

Thanks for your reply. I went to GP yesterday and he has given me antibiotics. I had the Pneumonia vaccine last year so should be protected from that. Have you not had the vaccine? I strongly advise you have it.

[tiachibird in reply to Webbyj]

Yes I have had the injection. I have always had the Flu injection for years also as I am a carer for my daughter who has cerebral palsy.

[Chris-Bromsgrove]

Hi Webbj,

Quite often it is a bad viral infection that acts as the trigger that starts Vasculitis in the first place (I believe it was in my case). However I've never heard of a virus causing a flare once you are in remission (I might be wrong). The main concern is that most of us are taking immunosuppressants and some infections can be difficult to clear up with a weakened immune system. If it's bacterial it may sometimes need the help of antibiotics to shift it. Chris

[Webbyj in reply to Chris-Bromsgrove]

Thanks Chris. I am, indeed, on antibiotics! And tomorrow I have the fun of having an appointment at Neurology for some tests!! Just when all seems good with this disease, something comes along to ruin it all. Still, mustn’t complain it could be worse. Hope all is well with you?

[gibson100]

Hi

I don't wish to alarm you but I would suggest you take this seriously.

I have had MPA for eight years and recently discovered that I am one of about 10% that also has lung involvement.This was diagnosed after a run of what I thought were chest infections but turned out to be active vasculitis in my lungs.This has resulted in permanent damage to my pulmonary system which is not reversible.I am now having regular rituxamab infusions more for the lung involvement than the original kidney problem.

Go and see your vasculitis consultant ASAP.Dont mess around with your GP.I went to my GP and was given antibiotics,then Xray,then cancer fastrack.All of which took months and were all wrong.

My consultants in North London now tell me to simply turn up at weekly clinic if I am feeling unwell or anything strange is happening.Although I have found it is best to email first to make sure I am on the list!

Hope this helps

[Webbyj]

Thanks gibson100. I saw my consultant nephrologist on Friday for a routine appointment and told him I am on anti biotics for a chest infection. He didn’t seem at all concerned and didn’t ask me anything about it! He said I am still in remission and all bloods are fine. However at the back of my mind I am a bit concerned because those bloods were taken befor I got the infection. Can I ask, did you always have lung involvement but didn’t realise or did it come on after diagnosis? I was diagnosed in May 2017 and in remission since October 2017.