Hi, Since my earlier post, I have now been diagnosed with Wegeners Granulomatosis (GPA). I am on 25mg of prednisolone a day and, due to having scleritis, I am taking four drops of Acular a day and a further two drops of dorzolamide to relieve growing eye pressure. At the moment, I have few, if any, aches and pains and feel pretty well and happy...the calm before the storm, I suspect!
Last week my lung function checks came out within the normal range but I was warned that this was a benchmark as I will be regularly monitored when I begin chemotherapy. My Rheumatologist also told me that for the first time there was some blood in my urine sample, albeit at a microscopic level. I have a CT scan on my lungs next week and the Rheumatologist has said that once the results of that are known and matched with the lung function checks, she will make the final decision as to whether I am treated with Cyclophosphamide or Mycophenolate. I admit to being pretty ignorant as to the pros and cons of each and which, if any, would be the least nasty! - so its all a bit bewildering at the moment and I know a lot of you will have gone through the same stages. Im therefore seeking to benefit from your experiences and, to that end, I have a few questions that you might be able to help with... many thanks in advance for any replies.
Would I be right to assume and expect that treatment will begin pretty quickly (before Xmas?).
I have read a lot about the side effects of cyclophosphamide (and steriods). What have your experiences been and have you found any coping mechanisms which might work for others?
Do you have any dietary suggestions that might be worth a try? - apart from the obvious general guidance
Any other wisdom always welcome!
Thanks for reading my post and best wishes to all on this forum.