Vasculitis and inflammatory markers blood tests

[azeyes]

6 years without a diagnosis  suspect for PAN. 5 biopsies were done while on 60 mg Prednisone very little results. Treatment being held back because inflammatory markers are not elevated. Normal sed rate normal ,c reactive protein , slightly elevated bun and creatin. Any advice in this area would be helpful. Using local rhumi no specialist in the area.

[Suzym2u Moderator Vasculitis UK]

If you call the VUK helpline we can help with some advice and sign post you to a centre in your area 03003650075. Or email [e-mail] or [e-mail] 

Susan 

[azeyes in reply to Suzym2u]

Thank you

[Suzym2u Moderator Vasculitis UK in reply to azeyes]

We can always help by email 

All the best

Susan 

[Hidden]

Hi azeyes, are you in the USA? 

[azeyes in reply to Hidden]

yes

[AndrewT]

Dear ezeyes,

This is one of 'those' questions, I'm afraid.  Some people DO get definite 'markers', or symptoms, others don't.  I'm afraid that you seem to be in the 'don't' category.  One person, writing hear a few months ago, was having a flare-up-with no symptoms/markers.  Fortunately, for him (I believe it was a man) has a VERY good/aware Doctors/Consultants-who DID recognise, and treat, his symptoms.  Clearly if, like you there are no clear 'markers' you are not always so lucky.

My best advice, and this Is a hard one, is to talk-at length if you can- to ALL the Medical People (for want of a better phrase) that are involved in your care.  Make them aware of your 'issues' or, at least, try to-such that when you say that you need help/treatment they will hopefully respond to you.  I know this does sound rather 'wooly' but, with no 'markers', to point at, I'm loathed to think quite what else you can do!

Sorry if this all sounds rather 'negative'- honestly DO care!

Can I, at least, leave you with my, indeed al our, very best prayers and wishes ezeyes.

AndrewT

[azeyes in reply to AndrewT]

Thanks for the support, you would thing 5 aneurysms burst in a major artery would be enough. Here it is all about the tests and the biopsy. However most doctors here do not know the basics that we had to learn the hard way. If you are doing a biopsy you can't be on 60mg of Prednisone no results will be found. Same for the sed rate crp and anca. Cortisone injections and steroids will alter the test results.

[AndrewT in reply to azeyes]

....and these people are the 'experts' are they???

[Hidden in reply to azeyes]

Some Professors insist that steroid etc woul not affect markers.  I beg to differ.  More like con artists to me.  Sorry to be blunt. Going back to the OT, the only choice you may have is to see someone else.  There are posters here who kissed numerous frogs until she found the One.  It's a bit like crappy dating game.  Sadly.