Lightwarrior

[Sangye]

No need to apologize Anne.

Dr Seo once told me that Weggies are more likely to die from infection than from Wegs itself. (That's once they're dx'ed of course) Anyone on any of the immunosuppressants is susceptible, but of course those on ctx or rtx are more so. Christi had so many things going on-- uncontrolled Wegs affecting her lungs (her Wegs never was controlled), blood clots in the lungs, and then infection. It would be incredibly hard to fight an infection under those conditions even if she weren't on rtx.

[Natalie]

Oh No , saddened By this news she was a great Support on here and I bet she was a wonderful lady in the flesh , thoughts and condolences to her Family and Friends xx

[drz]

Did anyone meet her in person? I think vdub almost did but I might be mistaken about that.

[chrisTIn@]

Did anyone meet her in person? I think vdub almost did but I might be mistaken about that.

You can read vdub's comment on this at page 2 of this thread, drz.
I don't know if anybody else from this forum met her...

[annekat]

No need to apologize Anne.

Dr Seo once told me that Weggies are more likely to die from infection than from Wegs itself. (That's once they're dx'ed of course) Anyone on any of the immunosuppressants is susceptible, but of course those on ctx or rtx are more so. Christi had so many things going on-- uncontrolled Wegs affecting her lungs (her Wegs never was controlled), blood clots in the lungs, and then infection. It would be incredibly hard to fight an infection under those conditions even if she weren't on rtx.

I'm curious, are people with other AI diseases, such as lupus, MS, the ones everyone has heard of, as susceptible as Weggies to catching these awful infections and possibly dying? I'm assuming they also take immunosuppressants and must be careful in crowds, etc. Do Weggies take stronger ones, higher doses, or for longer periods of time? Just curious, if anyone knows...

[Dirty Don]

I worked with a woman who, for years, had Lupus while she worked. She also had to take time off numerous times for colds, flu, severe lethargy, minor infections, etc. Don't know the drugs she was/is on, but she was very wary of those in the department who were sick at times...darn kids! LOL!

[renidrag]

I can't believe I have missed this thread til now. Again in tears at the computer. My thoughts and prayers to the family.
Dale

[Debbie C]

The lady I go to that teaches yoga has lupus and she refuses to go to a doctor.She wants to do it all holisticly by cleansing and eating certain foods. She is on no meds and never has blood work. She is sick alot of the time and doesn't look healthy at all but thats the way she wants to do things.

[annekat]

The lady I go to that teaches yoga has lupus and she refuses to go to a doctor.She wants to do it all holisticly by cleansing and eating certain foods. She is on no meds and never has blood work. She is sick alot of the time and doesn't look healthy at all but thats the way she wants to do things.

I wonder if that approach is less dangerous with lupus than it is with Wegs. We know that without immunosuppressive drugs, we Weggies would die of the disease itself. Maybe that is not a given with lupus, or maybe it depends on the seriousness of the case. I know someone with lupus who had a severe case; it went into her heart and she had to have major heart surgery. She is doing well now, but has been on prednisone for 40 years and will be for the rest of her life. I don't know what other meds she has taken. I believe that diet can help with AI diseases, but doubt that we should rely on it alone. It is all very interesting, and I love that more and more, we are looking at AI diseases as a whole, even though there may be big differences between them. We need to learn more about all of them. Best of luck to your yoga teacher, Debra.

[vdub]

Did anyone meet her in person? I think vdub almost did but I might be mistaken about that.

You are right. I did almost meet her. We were in Yuma and had set a time to meet at the hospital where she worked. We had just pulled up to the parking lot when I got a call that she had flared and wouldn't be able to meet. That was about a year ago.

When we are traveling in the RV, I often send a PM to wegs along our route to see if they would like to meet for lunch or something. I have tried to meet with Cindy twice. Usually, people are too busy, though. I don't think I've ever met another weggie, but it's not from lack of trying.