Hi all, my husband (39) was diagnosed with WG on Tuesday, and I was just researching on the internet when I came across this forum, so thought I would \"unload\", as I don't know you!
At the beginning of March he began to have hearing problems and was told he needed his ear syringed. By the time he went to the appointment, we pretty much suspected he had an ear infection, but he decided to have it done anyway. We went on holiday the following week, and he was feeling so rotten with flu-like symptoms, he thought about going to an out of hours doctor, but in the end decided the hassle wasn't worth it.
When we returned, he went back to his GP, who said he did have an ear infection and prescribed antibiotics for 7 days. About 2 days into the course, he developed aching joints and fatigue. Another 3 trips to the GP followed, plus an out of hours doctor visit at the weekend, with different antibiotics prescribed, during which time he developed swollen ankles and knees, a cough and various joint problems, which moved around from one joint to another every day. His GP arranged a blood test, which showed very high inflammatory markers, and arranged an immediate ENT appointment at the local hospital. This resulted in him being admitted 3 weeks ago for IV antibiotics for 2 days, but when they discharged him, he wasn't really feeling any better, the joint pains were worse, and he'd developed weird pinprick purple marks on his elbow which then turned into dark purple scabs after he was discharged. At this point he was convinced it was the antibiotics which were making him unwell, but as he'd been through every type available, I insisted that he didn't stop taking them.
All through this he was having such horrendous night sweats that I moved into my daughter's room, as he was literally soaking the bed every night (and I've got to get up for work at stupid o-clock).
He got to the point where he hadn't worked for 5 weeks (he's self-employed), could barely walk, and one hand swelled up to the point where he couldn't bend his fingers. Last Tuesday he started coughing up really alarmingly large amounts of blood, so we went to A&E, where the combination of coughing up blood and night sweats set alarm bells ringing and they suspected TB!
Luckily, one of the doctor's diagnosed vasculitis, and from that point they moved onto WG. He spent 2 days in ICU and is currently on HDU. He had chemo (cyclophosphamide) on day 2, and is also on prednisolone (hope I spelled that right), plus various antibiotics and loads of other stuff to counteract the chemo.
His kidneys have apparently not bee damaged, his heart is fine, and though there is some concern with his breathing, he seems to be getting a bit better each day.
I have been much heartened by what I have read recently, as this all happened very quickly, and I am hoping it was caught in time to prevent a very long recovery.
I suppose what I'm really here for is a bit of support and hope - we have two small children (a daughter aged 6 and a son aged 3 who miss him desperately but who are not allowed to visit at the moment), and I want to know what I can do and say to help with his recovery.
Sorry for such a long and rambling post!