Vasculitis flare up symptoms

Hi Everyone, my finance was diagnosed 2 years ago with Vasculitis MPO and was told he was in remission for the past year. I'm curious how many if you had the disease come back and how did you know? What were your symptoms. Thank you so much. I'm so thankful for this site.

13 Replies

  • Such are the complexities and varieties of vasculitis that I am not sure exactly what MPO is. However if I read things correctly then it seems as if it is an ANCA associated vasculitis, which is what I have (Microscopic Polyangiitis - MPA).

    In my case when I was first diagnosed I had an extensive rash on my lower legs - large areas of bright red spots. These were NOT accompanied by any pain or irritation. When immuno-suppressant treatments took effect the spots died, just leaving the skin discoloured.

    I know when the vasculitis flares because new red spots appear. If they are few in number and resolve themselves in two or three days, then I take no action. If they form an extensive rash, or if they persist for more than three days, then I e-mail photos to my consultant and he most likely would ask me to come in to his next weekly clinic.

    My understandng is that vasculitic spots can appear on any part of the body, not just the legs. However wherever they first appear, then that is where they will reappear in future. If they did appear at a new location then I would contact my consultant immediately. If I am wrong about this then no doubt another contributor to this site will tell us so.

  • Hi Jgold, yes it is ANCA vasculitis. Thank you so much for your reply. It was helpful.

  • Jgold, his type is MPA not sure why I always think it's MPO. Thanks for clarifying that for me. :)

  • As jgold says, a flare up is usually just a reoccurrence of the initial symptoms suffered previously. There is, of course, the possibility of variation and new symptoms. Vasculitis is fairly unpredicable but if something seems to be amiss then consult his doctor for advice. If still unsure go back to consultant. GP's aren't always clued up on Vasculitis.

  • Hi Christina,

    As a general rule most patients relapse with the symptoms they had at first, but a small number of patients will relapse with new symtoms.

    Sometimes relapses show in regular blood tests befor the patient starts to feel symptomatic.

    Is your partner seen regularly by their Consultant and do they have regular monitoring blood tests? Usually patients are kept on immunosupressant medications for at least 2 yrs after reaching remission to prevent relapse.

  • I was diagnosed with GPA 2 years ago and am currently in remission. At my last checkup in June my consultant did a new blood test to check my aziothoprine (spelling?!) level. He subsequently wrote that he would not reduce the dose of this immunosuppressant as my result was on the low side of normal. Sounds like a good idea, anyone else heard of this?

  • I never heard of that. How did he know? What is this "new" blood test? What is it called? What do they specifically check for? Sounds interesting.

  • Keyes, Thank you for replying. Yes he sees his doctor regularly and gets blood tests. He was going to the doctor every 3 months and at the last visit (September) he was told to come back in 6 monthsbx everything looked fine. History: He's been on Azathioprine since last August but a few months ago his wbc went down to 1 and he was told to reduce the med.. (Now his wbc hangs around 3 (where they want it) he also lost weight too (probably due to being off the prednisone) so he probably needed to reduce the azathioprine due to his reduced weight. Anyway, 2 nights ago (Monday night) he woke up with nausea, vomiting, (poss low-grade fever)and was sweating. The next day he felt OK (just a small headache and slightly tired) that night he had night sweats again. and since then hes been fine (just a little tired) but I wouldn't know if I didn't ask.(he acts the same) My Questiin: I hear that blood test aren't always a good indication of a flare, but you mentioned that sometimes the blood test will show something before symptoms arise. Can you please be more specific? What specific changes in the blood test should we look out for? (He also has kidney damage due to the vasculitis and sees a nepholgist (spelling). It was my impression that as long as the kidneys stay the same its a good indication that the disease is under control, (since the disease effected that the hardes). Do you agree?

    Thank you so much for your help. I really appreciate it.

  • Hi Christina,

    If your fiancé has kidney damage then the eGFR is the thing to look out for as its the percentage level that the kidneys are working at. If that's stable then it's a great sign.

    What type of ANCA associated Vasculitis does your partner have ( MPA, EGPA or GPA )? Depending on the type you can relapse in different ways, GPA can affect the sinuses and ears etc.

    The blood tests I was referring to are ANCA, CRP and ESR ( measurements of inflamation ). They can sometimes rise and indicate a flare before the patient notices symptoms. You can also flare with normal blood tests. As your partner is having some night sweats if they don't calm down I would definitely phone for a Consultant review as they can be a Vasculitis symptom.

    Probably the most important thing is how your partner is feeling in himself, if they start to feel unwell then much better to get checked quickly and get on top of symtoms if it is a flare.

  • Thank you Keyes for your help. My fiance has type MPA vasculitis. . I'll look into the blood test.

  • Keyes, I replied to your comment but for some reason it appeared independently. Unfortunately I can't copy and paste it from my phone to put it where it belongs to help you find it easier. If you scroll down it should be the 3rd one down. Please let me know if you see it. If not, I'll try to copy and paste it in my laptop. You're response is valuable to me, I'd love to hear what you have to say.

  • Really difficult one to answer. Mine was originally lung damage so when my breathing and asthma worsened I have an indication that things were wrong. I become sensitive to cold temperatures and develop flu-like symptoms and generally feel lethargic and unwell. The rash that appeared on flanks of my body when I first developed Churg Strauss do not appear but I can feel the sensation that something may come back. It is individual and complex unfortunately but the clinical approach would be to go to your consultant and ask for the blood tests to ascertain your eosinophil blood count, the marker of raised inflammation in the body. The key is to go to hospital quickly if the symptoms are really concerning. But that is only my opinion.

  • Thank you Rowmarsh, his Kidneys is what was effected. But according to the last blood test (a month ago) they were stable. It's good youre clear in what to look for. I'm glad you're doing well.

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