Anca vasculitits mpo

[Christina1960]

My fiance was diagnosed with Anca vasulititis in 2014. I was curious if one can be in "remission" and still have some mild symptoms? Has anyone experienced this?

[JontyW]

Remission normally means "free of active disease", so that would be no symptoms. It also requires you to be on a maintenance of <10mg steroids & immuno suppressant, or totally free of either.

But it depends just how 'mild' your symptoms are?

[Christina1960 in reply to JontyW]

Thank you JontyW, I appreciate your reply. I was told by the Dr's that it's pretty much a guessing game if one is in remission. They go by the blood test results, the symptoms and the way the person is feeling. However, when we saw the dr last, he didnt have these symotims. So basically i wanted to teach out to other people with this illness and compare notes. His symptoms are the red spots on his arms and white finger tips. Do you also have ANCA MPO? It's one of the rarer forms of vasculitis.

[JontyW in reply to Christina1960]

I have CSS (Churg Strauss Symdrome), which is also one of the rarer types of vasculitis, but that has nothing to do with the definition of "remission". since the definition is the same for all chronic diseases.

Most definitions of remission say that blood tests may not be 'normal', but they should be 'stable' (not changing much).

RE .."His symptoms are the red spots on his arms and white finger tips"

I can't comment on that, but I would class that as symptoms, although mild.

I hope this helps rather than confuses ....

[Christina1960 in reply to JontyW]

Thank you JontyW

[wooddustaffected]

With vasculitis being in 'remission' doesn't mean it has gone away as it means with cancer and such. Being in 'remission' means that it is being controlled to a level where it is not doing damage and perhaps the ANCA level is low (they actually have a figure with the test, the higher it is the more active the disease, the more likely permanent tissue damage). My husband is ANCA positive even at times when his Consultant speaks of him being in 'remission'. I have read an article by him where he describes what he means when he uses the word 'remission', he doesn't mean quite the same thing as one would expect. So yes my husband still gets some symptoms when in the past he's said to be in 'remission' but aways best to mention them to get them checked out and ANCA test done to see if it's on the rise, as that would be an indication that it wasn't being controlled sufficiently. However, minor mention it the Consultant. Sadly GP's aren't always that clued up on vasculitis. Usually it's a purple rash that isn't a good sign but as I say always best to mention it.

[Christina1960 in reply to wooddustaffected]

Thank you Wooddustaffected,

The Anca blood test isn't always reliable with MPO..that's why it's hard to know for sure. Right now he's seeing a rhumatologist who specializes in this disease and does clinical trials..not a GP.

What kind of Anca does your husband have?

[wooddustaffected]

No I do understand about ANCA, its why they can't consider it as an actual test for autoimmune disease but it can be a good indicator of in conjunction with other diagnostics. Both my husband and myself suffer from wegeners Granulomatosis. They say we're the only husband and wife couple in the world to have it, its so rare. No we didn't meet via a support group. Been together nearly 40 years now. Hence why our Consultants are of the opinion that in our case there has to be an environmental/occupational cause and why they brought in public health doctors to investigate our circumstances. Much research shows it is an occupational exposure. My comment about the GP was just because most people go to their GP first. I did understand and would assume your husband has a Consultant treating the vasculitis, as not something a GP could do alone. Best wishes.