But I feel well!!

I had an appointment with a very helpful specialist Rheumatology nurse yesterday who pointed out that whilst I may feel well it's possible that the Vasculitis (GPA in my case) is still active and causing permanent damage to my blood vessels and implicated body parts. This was a little worrying because I'm only having blood tests to monitor the Vasculitis at 6 monthly intervals. I have monthly blood tests to monitor health which may be impacted by the 20mg of Methotrexate a week. I obviously need to follow this up because 6 months seems like a long time to wait if I don't have strong symptoms indicating a flare but the Vasculitis could be active and doing damage.

I thought it might be useful for everybody to be aware that just because you aren't aware of any symptoms, it's possible that the Vasculitis is still very active.

5 Replies

  • Hi Dave,

    I wouldn't worry too much. If you feel well then the odds are you are well! Blood tests in vasculitis are only part of the picture, they need to be taken into account with symptoms as well. It's possible to flare with normal bloods and vice versa. The most important thing is to act quickly if any symptoms reoccur.

  • John is seen every 12 weeks as he is always ANCA positive, and has done for the last 15 years. If his inflammation levels gradually start increasing or the ANCA increases his medication is tweaked or changed to address this. What is "normal" for one person may not be for another. As Keyes says any new symptoms or recurring symptoms should always be investigated.

  • In theory, my GPA has been in remission for 7+ years and despite only testing C-ANCA positive at onset and never whilst still having active disease, I have my bloods and urine done every 2-3 months to monitor for change of any kind. However, 40% of AAV patients with active disease test ANCA negative so bloods can only ever be a part of the picture.

    There is evidence that some (possibly me included) have low-level 'grumbling' disease which can be localised and isn't detectable other than by biopsy despite appearing to be in full remission.

  • As Keyes says - don't worry too much!

    I'm sure she meant well, but that is just a situation that is "there" - if you see what I mean. There is no cure, all that can be done really is manage things as best they can. These are things that are grumbling away in the background but there are probably no ways of monitoring them. You could have bloods done every 3 weeks and it wouldn't flag up a lot. For many people, as long as they are taking an immunosuppressant their bloods will remain "normal". Mine are "normal" whether I take one or not, but the disease is there. My monitoring is the symptoms, there is nothing else. Symptoms equals - head for the doctor!

  • thank you, very helpful

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