Originally Posted by
Green Grass & High Tides
Hi Michelle,
UPENN is a good place to get tx. I'm sure they will know how to help. Rituxan has worked well for many people, with less overall harm than Cytoxan.
Rituxan had "negligible effect" for me according to my specialist. I had a severe flare at the time and I'm probably not a good example of the drugs effectiveness. Cytoxan did very little as well.
I doubt we would have been able to accurately assess any of my treatments if not for daily charting of wegeners symptoms.
I use a 1-10 severity scale and have about 7-10 symptoms that I track. I got this advice here and it has made a huge difference.
The Wegeners BVAS Evaluation Form is also helpful. Especially for me. Since I like to think "I'm not that bad"... and slough off more serious weg involvement.
So that scale helps me assess my own symptoms and know for myself that something like RTX is necessary or if it's working or not.
This scale helps me see if I have a severe flare, limited flare, persistent disease or remission (never had the pleasure of remission, yet...!).
I'm a dangerously optimistic person so I need to see it in black and white since I tend to remember everything as better than it was when in front of my doctor.
Hope this helps. Prayers for your successful FULL REMISSION!
Best wishes,
Tom