Hi everyone,

My name is Jon & I live in North Nottinghamshire in the UK.

I will be celebrating my 41st birthday in 2 weeks and up until my diagnosis of WG in June, I have never been seriously ill (aswell as never having heard of Wegener's Granulomatosis)

I guess certain alarm bells started ringing for me when I started with the runny nose & what I thought (and my GP thought) was an ear infection. I was prescribed a 7 day course of anti-biotics (Amoxycillin) but after a few days I noticed that there wasn't any improvement with my right ear (and I hadn't suffered from ear-ache since probably childhood, if ever!). I returned to my GP who prescribed me stronger anti-biotics (Co-amoxiclav) & referred me for a chest x-ray as my breathing was a bit raspy.

Can I just add that also at this stage, I had been experiencing disturbed sleep every night by a pain in the middle of my back. It wouldn't hurt throughout the day & would only "flare" up after being in bed a few hours, effectively waking me up in pain. After a good half hour out of bed, the pain would subside, so initially I thought it was either a mattress problem or the way I had been lay down in bed.

I was prescribed Omeprazole for this as my GP thought it may have been a reflux problem.

The results of my x-ray came back showing a shadow on my right lung & lumps on both sides indicating the possibility of cancer but then the name Wegener's Granulomatosis was mentioned as apparently I was a "classic" case especially with having sinusitis too. I also had CT scans which highlighted more lumps & nodules in my lungs.
All my blood tests came back fine so it was decided that I would have a biopsy taken from my nose as by this stage I was experiencing the crustiness that WG brings. This confirmed that I did indeed have WG - Needless to say, family & friends were staight onto the internet to find out more information (with various results from proper horror stories to proper medical diagnosis).

The next two weeks were probably what I can only describe as horrendous.

I was prescribed Preds 60mg, Omeprazole, Adcal D3 & Risedronate before I was to begin my course of treatment. I was in daily pain with aches & pains all over my back so was also taking Tramadol & Paracetamol. This lasted a couple of weeks in which I also suffered Faecial compaction fo a whole weekend, being prescribed Movicol that took it's time to work through my sytem (I call this time my "weekend from hell")

After this time I noticed that my left leg was starting to feel strain in the calf area, feeling like a pulled muscle or sprain etc. It then got worse, swelling up like over double it's size, making it impossible for me to walk on.

After seeing my Rheumatology consultant he referred me to hospital & on the same day I was admitted. After a doppler scan, it showed up that I had a blood clot about 4 - 5 inch from my groin. I was put on Heparin to start thinning the blood. My water sample was showing bloods +3 so they wanted me to have a kidney biopsy, which came back as showing mild vasculitis.

It was decided that I would have 6 fortnightly treatments of cyclophosphamide (the last one was on September 27th) & although everything has responded well, my bloods still are +3 but apparently that's something that happens with vasculitis or it may have something to do with the Warfarin I have to take for 6 months'

Anyways i have now been started on my 5 year "maintenance" course of daily Azathioprine, starting on 50mg a day and I begin my journey of learning what my body can and cannot do.
My preds have been reduced to 20mg from initially 60mg, then 30 then 25. My weight has also significantly increased from 64.8kg (hospital admittance weight) to currently 79.4kg

I am happy to answer any further questions & would like to get to know how this condition affects YOUR everyday life.

I am hoping to start back to work at the beginning of November after being on sick leave since the 10th June. How have you guys coped with any returns to work etc.

I look forward to hearing from you

Jon