Josh's story

[Sangye]

Hi Kelly,
Your son Josh is quite a kid. I'm glad you recognize that--not all parents recognize when they've got someone so special in their midst. I'm so sorry for what he's gone through from (literally) day 1.

My doc is one of the VF Wegs specialists at JHU. From his research and comments, it seems that they're getting a better idea of when to use which drugs for Wegs. They used to bring out the steamroller (ie, cytoxan and high-dose pred) for everything. Now they're using other drugs with much less toxicity. This is improving the quality and quantity of life for Weggies. I hope he's got a Wegs specialist. Even rheumys who see a good amount of Wegs don't really understand the nuances of the disease and how it can be managed differently.

I also had blood clots due to Wegs. Why is he still on Lovenox? I was on it for 2.5 yrs, but am now back to coumadin for life. Besides being horribly painful, Lovenox causes serious bone loss. Not a good idea for someone so young. Has he consulted a hematologist with experience in Wegs?

PS I went to chiropractic school in Seneca Falls--anywhere near you?

[mikebonella]

Josh is lucky to have a family that is getting involved and educated. My family helped me greatly when I was first hospitalized in 1996. I was in the ER for 3 weeks and had dialisis durring that time. I was lucky that the drugs worked and I didnt need a transplant. I did lose 30% of my kidney function though. Just remember that there is hope. a lot of people live with and manage this disease. The best news is that you got it diagnosed correctly. I am out of remission now and about to see a rheumatologist that was recommended by the vasculitis foundation. Im seeing her on Friday. I would highly recommend that you contact the foundation. They have support groups all over the country and lists of doctors who are very familiar with WG. I decided to dump my rheumatologist on the last visit when she admitted that Im somewhat of a mystery to her as well as one of her most intriguing cases. Im her only WG patient. Dont settle on docs who dont know this disease. My physician didnt even know to do ANCA tests...