I had a bit of a depressing day being in communication with people I respect highly and who obviously want to help but have only now cottoned onto what is happening in regards to my treatment. They are anti-steroids and been trying to convince me that this is not the way to go however not coming up with any alternatives either.
When the first message arrived at 3am I should have turned off the phone but decided to read it and had to swallow a valium before replying. It has steadily been dripping messages since then.
One of the recurring themes is the side effects of the toxic drugs I am on may kill me faster than the disease or do permanent irreversible damage. I managed to convince them that this is not the case as wegener's can get nasty very fast and told them I was in contact with a group of people who are doing ok due to the toxic drugs and going into remission etc etc. One reply was it's a pity I can't communicate with all those who died due to the treatment. That was a bit below the belt but ... the person is simply concerned so I won't get any madder than I am.
I thought I had put it all out of my mind but then decided maybe to start this thread and get some feedback. How can we distinguish we are suffering from the disease vs side effects of the drugs? When is a flare a flare and not a side effect? How many here have developed irreversible side effects caused not by Wegener's but by the drugs?
It sort of derailed me a bit but at the end of the day none of the discussions brought forth any alternatives so ... it was counterproductive and I need to put it behind me I guess. One good bit of advice was to keep a close eye on all my organs well I guess I am doing that in any case.
Would appreciate your feedback
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