Hi everybody,
thought I should update my Wegeners journey.
First diagnosed in 2010 and treated with cyclophosphamide and prednisone for a year and a half until a remission of sorts was induced.
Massive side affects during the treatment including hospitalisation around 60 times with psychosis which the doctor always blamed on me. I stopped all meds to prove it wasn’t me, even with the risk of the disease harming me and after that the doctors started disbelieving I even had Wegeners.
They strung out my appointments to six months and I was not given any maintenance therapy.
About two years ago my anca levels went through the roof and pathologist was recommending urgent action. The doctors continually ignore the test results.
I was feeling progressively more ill. Weak, nausea every morning, fatigue and trouble with my hearing. My hearing was getting worse. When I talked one would block of the other might. Sometimes both would. It was frustrating and an annoyance.
After a number of complaints to the hospital and having even arguments with the doctors things started to move.
August 2017 I suddenly had a massive vertigo attack which put me in hospital. They did very little and sent me home like that. The disease rapidly escalated and I began loosing the hearing in my right ear. Still not much action. Then I went totally deaf in right side and the left ear began loosing the hearing. This was accompanied with major tinnitus and 24 hr a day severe headaches and very sore eyes.
Next came the double vision which totally disabled me. I was forced into early retirement with no financial assistance. That was the end of November 2017. I was so sick by then.
Other specialists became involved. I think panic set in at the hospital.
My original specialists were trying to put me back on cyclophosphamide and I refused. I told them I’d been on that too long and that it was like taking poison. Not to mention the very high risk l will end up with cancer.
I kept asking for Rituximab as I’ve read a lot about it. In the end they agreed to Rituximab and high dose methyl prednisone. I think the government here doesn’t like to use it due to the cost except for serious relapses which mine was.
Had the treatments late February 2018. No instant results. Last week had the 3 doses of methyl prednisone and due to my allergic reaction it was done over 3 days in hospital. Instantly cured the headaches (almost), the pressure in my head stopped and single vision returned - Yah! 😀
From here I don’t know what to expect. I trust the magic drug Rituximab will start doing its job and l will get better.
I am now permanently deaf in right side and about 30% hearing left in left side due to delayed treatment. I still can’t walk properly due to an imbalance it caused. As this disease progresses if the treatment isn’t prompt you accumulate more and more disabilities.
Anyway, life goes on. I still haven’t the energy/strength to work so l will call this retirement. 🙃

Have a wonderful day,

Peter