I was diagnosed with GPA in 2017 with the main impact on my lungs which both collapsed. Inititially treated with cyclophosphamide and preds. I am now on azathyoprine and preds which have varied in strength between 5mg -40mg depending on how I feel. Currently I am on 15mg. Thankfully my kidney function has remained normal.
I have had several infections over the last couple of years which mainly affects my ear, eyes and nose and had a number of courses of antibiotics.
In June 2018 my rheumatologist advised my condition had relapsed following a bout of feeling unwell affecting the above areas and also new lesions in my lung were discovered. I received 4 X weekly rituximab infusions which helped a lot.
I have been feeling unwell again for a couple of months and last month my rheumatologist advised that my inflammation markers were up again and thinks I am having a flare. I am currently going through another course of rituximab.
Does anyone know what the difference is between a relapse and a flare?
Cheers
Stuc
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stuc
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It seems to depend on the doctor to be honest! If you google "difference between relapse and flare" you will get loads of links saying they are the same thing (in MS at least) - and offering other terms that may be used to mean the same thing.
In my own a/i disorder we as patients tend to differentiate between them. Polymyalgia rheumatica and giant cell arteritis are a bit different in that they are self-limiting autoimmune disorders for most people and they do eventually go into remission after a few years and you are able to stop taking the corticosteroids that are the only way of manging the inflammation and, therefore, the symptoms. We regard flares as increases in the disease activity so that the current dose of pred is no longer enough and symptoms reappear or maybe the return of the symptoms because of reducing the pred dose too far. We think of a relapse as being a return of the symptoms after having been able to reduce pred to zero and stop taking it for more than 6 months or so. It isn't unusual for people to get to zero, think they are done but then the symptoms reappear in a few months - in that case the disease activity is very low and it took a while for the inflammation to build up to a level where it caused symptoms.
A flare is something that usually can be sorted out by increasing the amount of prednisolone. A relapse may require significant increase in the immune suppressing drugs or even going back to induction with either Cyclophosphamide or Rituximab
There is a limit to how much cyclophosphamide you can receive. This is cumulative, so whether you reach the maximum in the initial or subsequent courses, you can no longer have this medication in future relapses. I had the maximum cyclophosphamide after being on it twice, once when I was diagnosed, then again after a relapse. I was also put on Azathioprine after each course of cyclophosphamide, but this did not prevent my relapses (I had 2 within 2 years of diagnosis), and Azathioprene also wiped out my white blood cells to unsafe levels. Then I was put on Retuximab, and have remained on it with infusions every 6 months for over 2 years now. I have had no relapses while on Retuximab, and it is the only medication that has turned my ANCA from positive to negative and has remained negative to date. If Retuximab helped you, but you aren't on it currently, you might want to inquire about getting it as a maintenance treatment.
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