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[Lima51]

My husband has microscopic polyangiitis - was diagnosed in sept 16 - and is in remission or? He has the lasts months had BP going higher - some stomach pain - rashes on his arms and should go to control next week. For two weeks ago he got a flu and went to see our familidoctor. He sent him to gastroscopi. It was clear but som bloodwork was wrong and then he was sent to CT-scanning which was ok overall - exept from the liver. There was a small part of something perhaps cancer and now he is going to a biopsi. My thoughts go back to sept 16 where doctors in hospital told us - before biopsy - that he had cancer in his lungs. Could the same happen this time? Our doctor has told my husband not to come to the examination about vasculitis because the other checks are much more important. I am afraid that they don´t see the vasculitis.. Any help from anybody?

[AmyS1]

Are you in the UK? Is your husband actually being seen by a vasculitis specialist centre. Talk to Vasculitis telephone helpline.

[Lima51 in reply to AmyS1]

Thanks for your response. We live in Denmark and yes my husband goes to a specialist center twice a year. He should go there next week to check up his kidneys (which are about 50%). But our family doctor has asked him to wait - because it is more important about what he for now thinks is cancer. Our familydoctor is almost new but very very competent. He has not been around the vasculitis and my husband hasn´t even told him about. Perhaps he´s just have seen messages from the kidneydoctor?

[zoe69 Administrator Volunteer Vasculitis UK]

Can your husband not see both specialists?

I would advise to contact his vasculitis specialist asap and let them know about the findings. It is essential that the doctors will collaborate if other treatment is needed.

[amms43]

I agree entirely with the reply from zoe69. It really is very important that the doctors work in collaboration and microscopic polyangiitis (I have it too) is a serious illness if it is not treated. Try to get your husband to speak to his cancer specialist about it. Is he being treated for the vasculitis?

[Lima51]

Thank so much for replies. His symptoms right now are the same as from the start of MPO: Weightlos difficulties for eating and a bit more tired than else. For 3,5 years ago we were told that he had metastaser-cancer in his lungs seen on af CT-scan. They were so sure even I told them that you not can see what it is on a scan. But later - when they didn´t see cancer in lungs or kidneys - we were told it was vasculitis. BUT they didn´t see any vasculitis in the tests (only I think 25 in bloodworkP-anca). They decided to treat because his kidneys only work about 35%. Lots of prenisolon, cychlofosfamid - and later 2 times rituximap. The last 1,5 year he hasn´t got any medicine exept for BP which he still gets.

Is it possible that it is a flare - and this in another organ?

[Mooka]

I think he should attend his Vasculitis appointment unless it clashes with the other one. If that’s the case he should contact his specialist as soon as possible. It does seem possible for your husband to flare if he is not on any medication so soon after diagnosis.

[tisme2]

I was diagnosed with MPO in 2011. My symptoms showed shadows in my lungs and I had to have a biopsy done to find out that it wasn’t cancer but dried blood cells. Then because it showed blood in urine sample I had a biopsy on my kidneys and that’s when the Vasculitis was confirmed. So biopsies need to be done before cancer is confirmed or ruled out. This may all be to do with his Vasculitis so definitely talk to the specialist and ask that he/she discusses it with the other doctors. Keep checking the BP that’s important especially for the kidneys. Don’t panic this may all be down to a flare up. Best wishes to you anyway.

[Lima51]

My husband has been talking to the vasculitis/ kidneydoc and the cancerteam today. None of them see vasculitis as the theme. Now he is going to a liver-biopsi this Friday. He was told there is a shadow on his liver 5x5 cm. I am so afraid. They also said that they just couldn´t operate it away because of the position. We get answer from the biopsi th 20. of December where they also will tell what can be done.