Endocrinology Update-- Mixed News

[Lightwarrior]

dont cry if you cry so will i, i have the problem re weight im just under 100 kilos, please try to not worry.. all of this is out of our hands, just have to go with the flow sending my love cheer up janet x

Janet, Here is to a virtual cry....... there now we all have it out of our systems, our tears have washed our souls and we can move forward together knowing that we are not alone. Group Hug

[greenjanet]

thanks used all my tissues xx

[KathyB]

Sangye -- what has Dr. Seo said about the number of rounds of Rtx? I've had two and my rheumy doesn't know if he's going to have me do another in September because of possible worries of the drug. As I've mentioned before, I may request a referral to UNC.

Hope things are improving for you!

KB

[Sangye]

After my first round of rtx we took a wait and see approach, hoping it might put me into a lasting remission. About 7 months after it the Wegs began to wake up. Since my labs still looked okay we chalked it up to other things (well, Dr Seo did. I pretty much knew it was Wegs). When it became obvious that the Wegs dog had awakened we did another round. Wegs activity for me means hemorrhaging lungs-- a severe flare. We repeated the rtx hoping a second round would do it. Same thing.

It's highly variable between people. Some get one rtx round and they're in remission. Others need it every few years and some of us need it on a regular basis. No way to know unless you try.

There are no other options for me, so Dr Seo has me tough it out to make the rtx last a year.

[KathyB]

Sangye -- and you go to Johns Hopkins, right? I lived in Fredericksburg, VA, but went to MCV (Richmond) on emergency after my local hospital sent me home while recovering from acute kidney failure and I started spitting up blood. I now know it was WG. A young man in our community also goes to JH for WG. Of course, now we've permanently relocated to the OBX which makes JH even further! Still have lots of faith in MCV and it may be I won't have another RTX round in September. My rheumy is a UNC grad and went to school with Dr. Falk. I may end up at UNC for further study and decisions. Realizing we are all different, it still helps formulate ideas and questions when we learn about each other. Thx for sharing!

KB