Anca level high is this a problem ?

[essexboy]

I have had AAV vasculitis for eight months now and my anca level has been very high, I now have rituxamab every four months and as of tomorrow I also start a new drug which I have to take once a week, does this ring any bells with my fellow vasculities members cheers

[vivdunstan Volunteer]

Is the new drug Methotrexate? That is normally taken weekly, either by pills or by injection.

[Hidden]

Can you be a little more specific by 'high' please? As you're probably aware the ANCA test isn't very reliable as a biomedical marker but it's concerning that you've not responded to Rituximab..It's normally used when other drugs haven't worked (e.g. cyclophosamide and methotrexate) but under circumstances it is used a a front line treatment.

To not see your ANCA levels fall after 8 months would suggest a different drug may be necessary for you but I'm a little puzzled by the four monthly regime. The adopted practice is usually two initial doses a fortnight apart then a dose every six months for two years. Are you also on other immune suppressants such as steroids?

It's absolutely vital your clinician is knowledgeable enough to treat your AAV properly. Many people here will testify that in some cases 'doctor doesn't always know best'. In my case I have a first class, experienced consultant (plus I get treated at Addenbrookes) but I didn't respond too cyclophos. and my lungs were damaged in a very short period of time. In my case Rituximab was my saviour but concede it doesn't work for everyone.

Healthy wishes.

Martin

[essexboy]

Hi

Yes sorry my new drug is methotrexate I also attend addenbrooke, my anca level at times is so high it cannot be measured it is 124 as of two weeks ago

[Hidden in reply to essexboy]

That really is puzzling although I do know of someone with an ANCA of 200 and she's fine! It sounds as if you're in good hands although my experience at Addenbrokes is that one or two junior members of the vasculitis team aren't as good when it comes to thinking outside the box.

Keep us posted and wishing you well.

[ken13]

When I first was diagnosed mtg anca was+200 that was in 2009 after 4 pulses of cyclo and various other treatments that didn't, t work now on annual dose of rituximab 1 gram and last reading was 16 and in remission

[johnyenglish]

Not sure if this helps but I've just got my 6 monthly blood test results back and despite being healthy and in remission (taking Methotrexate) my C-ANCA is 1:640 and Proteinase 3 is 177.

[dskizs]

Ok someone answer this. Is ANCA written differently in other countries? Johnnyenglish is the first one to post his score like my reading in Germany. My scores fall between 1:40 to 1:80 positive over the past 5 months without medication. Everyone else post scores like 200 - 345 etc. anyone know what is up with this?

[johnyenglish]

Hi dskizs, might be worth starting a new question as people probably won't see this one now its down the page.