Primary or Secondary? I'm confused..

[judyann]

I was wondering how to know the difference between primary and secondary vasculitis. I am anca negative and was checked twice. How can the doctor tell the difference?

[PMRpro]

This is a professional reference so may be a bit complicated or have stuff you don't need but it is quite good I think:

patient.info/doctor/vasculi...

Basically, if they can diagnose another condition that can cause vasculitis, your vasculitis is possibly secondary, if they can't identify one - it is probably primary. Often they find out that the vasculitis is secondary later on. Mind changing in autoimmune disease is not unusual.

[judyann in reply to PMRpro]

Hi.. Thanks for the reply... It makes sense. We are trying to figure that out now.. So confusing...

[LMB2]

Hi Judyann. Primary basically means that they do not know why or where the illness came from. Secondary means that the illness was caused by either another illness or due to drugs taken (as far as I am aware). I have Primary cerebral vasculitis and the doctors have no idea why I have it or what caused it. Hope this helps.

[judyann in reply to LMB2]

Hi.. Ok.. That makes more sense. I was sick for 2 years with joint pain and then got vasculitis. I don't know if the joint pain was vasculitis, or the vasculitis was from the arthritis. Confusing.. I hope the doctor figures this out with me. I want to be treated correctly.

[PMRpro in reply to judyann]

For treatment it often doesn't matter - very little in autoimmune disease is curable so the aim is to find the best medication to manage the symptoms for YOU. And what works best for me or my neighbour may not be the one that works best for you. There are often several drugs that will probably work but they can't be sure. So you are started with the one that in their experience has the fewest problems associated with it. If that doesn't work for whatever reason they move on to the next. It takes patience on your part and on theirs. Sometimes something works well but stops working as well later - it is a quite normal thing.

All the best.

[judyann in reply to PMRpro]

Thanks.. I go to the doctor on Monday for follow up after a month of prednisone.. You've helped me a lot.. thanks judy

[Hidden in reply to PMRpro]

Whatever normal is!!

[Hidden in reply to judyann]

Mine must be secondary, as I have Rheumatoid Vasculitis which is down to me having Rheumatoid Arthritis for 30 years. Seronegative to start with which changed to Seropositive around 2014. Diagnosed with Vasc about 2015.

[judyann in reply to Hidden]

Oh I'm so sorry you have to deal with that.. I have psoriatic they think.. And they say vasculitis doesn't happen from that.. I think I have primary.. Not sure though.. Going to a new rheumy.. I hope they can help me figure it out.. best of luck to you...

[Hidden]

Hi Judyann,

Primary Vasculitis ( there are over 18 different types ) is much more common than secondary. ANCA is an auto antibody which is associated with 3 variants of Vasculitis but confusingly you can have an ANCA associated Vasculitis but be ANCA negative.

As Vasculitis is rare and complex the best way to get a definitive diagnosis and treatment is to see a Consultant with good experience in diagnosing and treating Vasculitis, unfortunately they are few and far between.

The type of Vasculitis matters as it informs the treatment you are given and the monitoring, it's much better to be given a definitive diagnosis. Lots of inflammatory diseases respond to prednisolone so response to that isn't specific for Vasculitis.

You are welcome to phone or E mail the VUK helpline and either John or myself can talk things through with you and try to help. I suspect that the most pressing question in your case is do you have Vasculitis, not whether it's primary or secondary.

Best wishes

Lynn

[Hidden in reply to Hidden]

Helpline details

vasculitis.org.uk/helpline

[judyann in reply to Hidden]

Hi Lynn.. I'm in the US so I can't call, but I would love to.. I see the neurologist on Monday, and I will let you know what happens.. She's very thorough. Thanks again.. Judy