Just joined forum

[WG mom]

Hello All,

I have been "lurking" on this forum for a few months now and decided to join. My daughter (age 25) was diagnosed with Wegener's in January 2014 and I found this forum while doing internet research. I am trying to learn as much as I can. So far, this forum has been extremely helpful, both in providing me with lots of information as well as helping me with the emotional struggles of being a mom whose daughter is fighting this horrid disease. So thank you all for helping me understand. I admire each and every one of you and wish you all the best in conquering this disease.

Just a quick update on my daughter's progress. After six months of ups and downs on the meds (prednisone, methotrexate and bactrim) she began the rituxan last week. She will receive drip #2 in a couple of days and then has 2 more. My understanding is that it can take even a couple of months to determine if the rituxan is working, but I am remaining cautiously optimistic at this point.

[rif]

Hi WG mum I am also one of those, my son was finally diagnosed in March 2009. Very scary time in ICU for many weeks on life support, I spent more time at bedside than at home, emergency surgery and blood transfusions plus the daily battle to get disease under some control. They decided that RTX was the only option so he had two infusions at two weeks apart before leaving hospital then a further one in Sept of same year. The next two infusions were necessary after flare in Aug/Sep of 2011. To date he has not needed any more. The RTX appeared to work fairly quickly although never obtained remission. He takes Pred, Mycophenalate(Cellcept), Ad-Cal and Ramipril daily and sees Consultant at 12 weeks intervals with regular bloods. RTX appears to be working for him so I pray it will work for your daughter.

Mums always worry about their children no matter what age, when they are ill we suffer with them. Hang in there and always think positive, both for you and your daughter.

Rif

[lag713]

I was diagnosed January 2014 at 26 years old. Please let your daughter know that there are people around her age going through the same thing. I know most Weggies are a bit older when diagnosed. I felt isolated at first because most people my age don't have chronic conditions and can't relate to what I'm going through. This diagnosis and treatment has made me feel much older than my age. I think I've developed a new perspective on life and what I want from it. In that way, I am grateful for the experience. I hope you and your daughter are doing well with coming to terms with the diagnosis. Sometimes it feels like old hat but whenever things go wrong or seem problematic, I feel as if I need to come to terms with it all over again (although the period is shorter each time it reoccurs). Keep up the cautious optimism! I hope the RTX does the trick!

Thank you for trying to educate yourself about Wegener's and being supportive of your daughter during this time. My mother initially freaked out then tried to ignore and minimize it. Talking to her about it has been a challenge but she has come around to asking how I'm doing on a more regular basis.

[jlove]

I was diagnosed January 2014 at 26 years old. Please let your daughter know that there are people around her age going through the same thing. I know most Weggies are a bit older when diagnosed. I felt isolated at first because most people my age don't have chronic conditions and can't relate to what I'm going through. This diagnosis and treatment has made me feel much older than my age. I think I've developed a new perspective on life and what I want from it. In that way, I am grateful for the experience. I hope you and your daughter are doing well with coming to terms with the diagnosis. Sometimes it feels like old hat but whenever things go wrong or seem problematic, I feel as if I need to come to terms with it all over again (although the period is shorter each time it reoccurs). Keep up the cautious optimism! I hope the RTX does the trick!


I'm 24 now and was diagnosed at 22 but I had my first symptoms starting at age 16. I definitely agree with you on developing a new perspective on life. While my diagnosis does make me feel older than I am sometimes, it is teaching me responsibility and the importance of prioritizing your health at a young age. It's not all bad!

It's definitely not easy though. Some people are very understanding and while others are not. Seeing how people have reacted to my symptoms has definitely affected my friendships, some for better and some for worse. I have learned that there are some people I can't really talk to about it and that's okay. On the flip side, it makes me extremely grateful for the people I can talk to.

WG mom, it's awesome that you're on here learning about the disease and how to cope with it! This community has a lot of knowledge to share and it helps me feel like I'm not alone with my problems. You should tell your daughter to check out this forum if she hasn't already!

[WG mom]

Thank you for your support, Rif, lag713 and jesslove215. As I write, my daughter is receiving her 2nd rtx drip- so far so good. We are texting back and forth as she is 1000 miles away. (UGH). She is very discouraged, though, about her recent weight gain from the prednisone. I read an article that said to eat potassium rich foods and decrease sodium intake to help combat the water weight. Anybody find this to be true?

[jlove]

I actually just started up prednisone again for a short course (hopefully) so I'm dealing with this now also. I definitely aim to decrease sodium intake but I've never heard about potassium helping. I bought a few bananas at the grocery store tonight just in case haha. I do find that decreasing sodium helps and I try to drink a lot of water. I'm drinking about 3 Liters a day right now and I think it's really helping out.