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Update on pwc51
All,
I feel the time is right for an update!
Those who have seen my prior postings will know some of the early detail but a summary here may be useful.
I was first diagnosed in July 2009 after a fairly short spell of trying to fix a sinus problem. At the time of diagnosis I had sinus problem, considerable loss of hearing in both ears, shortness of breath when climbing a single flight of stairs, severe joint pain and kidney involvement. An initial 5 month period of Cyclophosphamide (starting at 2 week intervals and extending to 4) pushed it into ‘remission’ which was maintained with methotrexate (tablets) until October 2010.
During this period the sinus problem was reduced to minimal inconvenience (not worthy of any further action, hearing restored 100%, breathing problems were cured, kidney function returned to very bottom of ‘normal’ spectrum. No joint pain was experienced but, early on, the vascultic rash was evident, although this stopped after a while.
In October 2010 I began suffering from the severe joint pain again. Blood tests showed the high inflammatory markers so we stopped the methotrexate and began another course of Cyclophosphamide. This has varied between 2 and 3 week intervals and combined with high steroid infusions. Whilst there has been some improvement the inflammatory markers have steadfastly refused to come down to the normal levels this time. Whilst the initial joint pain disappeared early in this course of treatment it began coming back again in the past 2 or 3 weeks. This was combined with considerable vasculitic rash on feet, ankles and lower leg – an indication of disease activity.
On the whole my health has been good but the ‘new normal’ means considerably less activity than I was used to before and long periods of rest. I continue to work fulltime although travel recently has been stopped as it was strongly advised against whilst undergoing the Cyclophosphamide infusions.
Bottom line is that we are stopping the Cyclophosphamide and switching to Rituximab infusions (2 – 2 weeks apart), starting next week. This will be ‘supported’ by 15mg methotrexate injections. For those in the UK, owing to the cost of Rituximab my consultant had to apply to NICE for this to be approved. This was granted in short order last week.
Looking forward to Rituximab pushing the WG to remission! I will keep you posted on developments.
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Originally Posted by Sangye
