Vasculitis UK
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Recently diagnosed with ANCA Associated Vascultis called Microscopic Polyangiitis, and seeking understanding

Hi all, I am new to this site and a a Washington State, U.S. woman recently diagnosed with an ANCA Associated Vasculitis called MPA.

I was just diagnosed with MPA and trying to make sense out of my new "status" in life. I was put on Prednisone 30mg then 20 mg. and now at 15mg as doc just had me add Methotrexate 1x a week dosing (12.5 mg). I was on Arava (Leflunomide) before and it was fine for 9 years - for Rheumatoid Arthritis - but all the medical treatment folks like Methotrexate better for this ANCA Associated Vasculitis.

It began miserably in early December with lightheaded, weakness, and some slight dizziness, then an episode of unbearable chest, neck and head pressure and head pain (E.R. visit), then Atrial Fibrillation (E.R. again and cardioverted), then trouble breathing (E.R. )and told I had Congestive Heart Failure and Pneumonia per CT Scan), then chest pain and hospital (Pleurisy), and meanwhile urinalyses were bad, had anemia, low thyroid, had had swollen spleen, and cannot even remember all the other stuff. Cardiologist said not Congestive Heart Failure (Praise God!), but went to Rheumatologist asking what on earth is going on in my body to have this super attack. Lots of tests showed big time inflammation, and finally the P-ANCA with MPO that identifies Microscopic Polyangiitis quite specifically.

However, a cancer protein showed up that is linked to Multiple Myeloma so more tests and the M Spike was there, uh oh. I see the Oncologist/Hematologist on Thursday. Double whammy? Or do these two things overlap?

Started Prednisone about 3 weeks ago, and now first day with Methotrexate. VERY tired! But I was anyway. Now that Prednisone is down to 15 mg. I feel I can sleep better - that's all I want to do. But I work, so sleeping a lot is not an option.

Currently my right lung has fluid in it (may be gone by now) and I feel the pleurisy rub (not painful these days) on both sides - it was only on the right side more recently until today. The Pleurisy has been off and on since August. Maybe all this was set off by the bad insect bite I got on the right side of my chest just down from the armpit. Hmm.

Stlll, off I go to work in the morning. Life goes on.

4 Replies
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Hi PattyMPA,

Welcome to the group.

MPA is usually treated with either Cyclophosamide or Rituximab to induce remission, Methotrexate is usually a maintenance medication. ANCA associated Vasculitis need agresdive treatment to bring about remission and prevent further organ damage.

Have you had a biopsy from anywhere to confirm the diagnosis?

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Hi, thank you for your input. I was scheduled today for a Thoracentesis but sent home because the excess pleural fluid was gone so there was nothing to aspirate, which was a good thing as I have had pleurisy since August off and on. Rheumatologist feels biopsy is invasive and wants to find a safe place in my body to do that. I see him Monday again so we will talk about that. In our area near Seattle it seems they aren't wanting to use Cyclophosamide, and he said Rituximab maybe but I think he may be being just a bit too middle of the road conservative. Of course starting at 40 mg Pred mid January was not conservative. But now at 15 mg it may be. Plus 3 doses of Methotrexate 12.5 mg ea time which began on 2/4. New symptoms of ear and throat pain.

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Good luck Patty i have had Cyclophs and Rituximab now and azothioprine in between.On steroids all the time but feeling ok.Its a battle and depressing at times but chin up and i have a great team looking after me which counts for a lot.Plenty of support at home so ok.Good luck.

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I really believe my life was saved by early intervention...God getting me into a genius visiting Rheumatologist on December 27th who thought to test for this and other things. Then back to my reg ular Rheum in January but overall very pleased with the team at Kaiser Permanente.

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