Wegeners Granulomatosis – diagnosed 2001

April 2001 – April 2021
The BOGOF … Buy One Get One Free …. Couple 🥰
John and Susan Mills in Paris for the International Vasculitis Conference 2013

Exactly 20 years ago this month, my husband John was taken seriously ill. He had not quite been his normal robust self for a few months. Niggling health problems, a lingering blocked up nose, sinusitis, aching hips and aching legs. He had meant to make an appointment with the GP but never quite got round to it. John worked very hard as an NHS dentist in a large rural practice and was always so very busy. In the February we had been skiing, John certainly was not himself and his legs really ached. I remember him telling me that he felt as though he was skiing through treacle. 

Anyway, one evening in April, he was insulating the loft with a fibre glass material when he suddenly starting coughing up copious amounts of blood. This certainly started the alarm bells ringing both with John and his GP. John was referred to the hospital as an emergency. Radiographs revealed shadows on both lungs, sputum tests were taken and he was given a raft of blood tests and sent home. John was signed off work. A few days later he was admitted as a day patient for a lung biopsy. 

We had to wait 3 weeks for all the sputum tests, biopsy result and blood tests to return from the laboratory. Both Sarcoidosis and TB had been discussed as a possible diagnosis. During those three weeks John’s health deteriorated rapidly, he was still coughing up blood, having nose bleeds, suffering with a very large mouth ulcer, the size of a 50 pence piece on his soft palate, he became very weak, leg and arm strength became weak and he was struggling to breath. Within 2 weeks he was confined to bed and was given oxygen by the bed. He needed assistance to go to the loo and he had lost 13kg. He refused to be admitted into hospital.

During the third week of April, we really thought we were going to lose John. But one doctor, a Dr Hadfield, just thought he might have a disease called Wegeners Granulomatoisis but TB had to be ruled out first before he began treating John and he needed the result of the biopsy. I looked WG up on the internet and frightened myself to death but I did find Paul and Jill Pegg from the Stuart Strange Vasculitis Trust (SSVT). Tthey were both a great help and a support to me. I shall never forget them. 

At the end of the third week it was confirmed John indeed did have Wegeners Granulomatosis (WG). Only just in the nick of time. John was at this time drifting in and out of consciousness. As soon as WG had been confirmed he was rushed into hospital,  given high dose steroids and he started his Cyclophosphamide infusions. He was given 6 infusions over a period of 12 weeks. After the very first infusion he began to feel so much better, by the third infusion he was ready to return to work. 

John – Prednisolone chubby cheeks – 1 year after diagnosis 

He did return to work, but with hindsight he probably returned too soon and should have waited just another few weeks: his stamina was still low and he would tire very easily especially as he was moved onto oral cyclophosphamide then maintenance immune suppressant therapy and the steroids were reduced. (Rituximab was certainly not available back then and MMF only became available in 2005).

We always have said life with vasculitis is certainly different from the one we had planned: not worse, but very different. We still managed four exotic holidays, bought a house in SW France in the September of 2001 when house prices there were very low, and continued to renovate our own house here in the U.K. 

Cephalonia, 4 months after diagnosis

We sadly had to stop the skiing – his legs never regained the strength to ski again and John no longer could walk up hills due to the scarring on his lungs. But we managed walking on the flat, the odd cycle trail outing, grandchild care and holidays here in the U.K.

In 2007 John was diagnosed with a DVT due to the Vasculitis and in 2008 was diagnosed with bladder cancer due to the accumulative effect of years of taking oral cyclophosphamide. In the last five years, John has also suffered other health problems mostly due to the advancing years but probably also due to being immune suppressed for over 15 years. Thankfully treatments and drugs to manage vasculitis are much better today than back in 2001. In 2009, John was asked to become chair of the Stuart Strange Vasculitis Trust (SSVT), which he did, and in 2010 the SSVT became Vasculitis UK.

First Vasculitis U.K. Patient Symposium 2015 

Zooming with Prof Chris Whitty – April 2021

I just cannot believe where the last 20 years have gone 

Susan Mills
April 2021