New member...

[MeggGriffin]

Hi, my name is Meg. I am new to the forum, but not new to the disease. I am going into my fourth year of treatment. I am 24, diagnosed in my 20s, and I am from the USA (Georgia.)

I cannot explain why I never went looking for others with Wegener's. I have several friends with autoimmune diseases, and part of me just wanted to get into remission as soon as possible, and never think of it again. Unfortunately, 3 months after my diagnoses, I had a car accident that nearly took my life. Somehow, the wegener's made it's way into remission just long enough for me to get over my accident (a month in ICU with a broken arm and a torn set of quad muscles, relearning how to walk, plastic surgery, blood clot) and then it was back fiercer than ever. But it had made it's way into remission once, why not again?

I did three years of methotrexate, which my body began to break through, and I am just finishing a year of Imuran.

I am starting to reach out to find others to see if it is possible to not get into remission. I also went looking to see genuine responses from people who have taken rituxan— my doctor is wanting to put me on this next. It seems like a relief in a sense, 4 weeks and I am done?

I'm also a little concerned about the lack of awareness for autoimmune diseases in the USA --quite possible all over the world too. But that's just me starting to ramble...

[Debbie C]

Hi Meg, welcome to the forum,sorry you had to get this nasty disease at such a young age,but u came to the right place for any questions you may have.There are alot of people here with alot more knowledge than I and am sure u will be hearing from alot of them.I am currently in remission and taking 5 mg. of pred.I was not able to tolerate all the other meds well,although I did have 1 infusion of rituxan and it seemed to help alot. My problem is I keep getting reoccurring nodules in my lungs.I don't know where wegs has affected you but I'm sure rituxan could help. Keep in touch and Good luck

[Dirty Don]

Welcome to the forum...a place of giddy & gutty Weggies, knowledgeable sickies, and truly comforting friends! About time you got here Meg! Just from what I've been told by my docs, if the mtx didn't do it, then it was on to Rituximab/Rituxan...and then I don't know what. It seems those who respond well to the drugs do about 2 years on them, and that, of course, depends on their general health, damage done by the disease, etc. When anything doesn't have numbers/population behind it, as this rare disease and others like it don't...then the awareness will be down mostly because of lack of financial support. I see people making efforts, and every little bit counts...again, welcome, and keep asking questions and sharing!

[mishb]

Hi Meg and welcome.

Wow, 4 years and you haven't looked us up.......I would be lost without this place and these people.....but lets just keep that between you and me. Sometimes it better not to tell them everything :flapper:

I am still taking MTX so can't offer any help with rituxan.

Take care of yourself and remember to ..........

[Psyborg]

Welcome to the forum Meg.

[annekat]

Welcome, Meg. Going through that car accident and Wegs, too, it's understandable you didn't have much energy to look for other Weggies. But we are glad you are here now. Regarding remission and experiences with the drugs, it seems to be a little different for everyone, as does Wegs itself. A few people have a seemingly predictable, straightforward case, but even they may get a surprise later! There are others here who can answer your questions better than I, but I hope we keep hearing from you! When I first joined the forum, I lurked for a few months and got a lot of info by searching the archives in addition to reading current posts. It felt great when I finally "came out"!

[jola57]

Hi Meg, welcome to the support group. I was diagnosed in 2007 and have been twice on cyclophosphamide, once for 6 months and next year and half because of a flare. Then I was pur on methotrexate 20mg quickly down to 15, 10 and now 7.5mg because of bad liver results. Prednisone was a rollercoaster, 10, 15, 30, 50, then slowly down to the present 3mg (just strted 2lthis week). So far so good and no bad flares but I do still have high cANCA and it did lower considerable while I was on cyclo which means that technically I am not in remission. I have never taken imuran or rituximab. How are your blood works, and how do you know you are not in remission? Is wegs still raging or has it quieted?

[Lightwarrior]

Meg,
Ahhh......so you were one of the lurkers, we have had a few. I'm so glad you came in out of the cold to join us. I was dx 12/09/2009. My rheumy told me he didn't think I would see Christmas and neither did I. The cytoxan and pred saved the day but the side effects have a cost. I have never been med free. I am currently on Methotrexate once a week and 5mg of pred. I am trying to head off a flare, I see my rheumy next week. Enough about me.

One of members Marta Rode is very involved in raising awareness of autoimmune diseases and Wegs in particular. Google find the common thread and you can see some of the amazing work she has done and join in if you like. Don't worry about rambling, I blame it on the pred. Maybe it is a personality trait of Weggies???

Anyway, now that I have stopped rambling, welcome to our group. I hope that you will soon discover that we will become like family. My journey is so much richer because of the interactions I have here on this forum. Welcome

[Pete]

Welcome Meg,

Glad you found us, and I hope you'll find this forum a source of useful information -- even if it's only trying to figure out what questions to ask your docs. Hope you're fully recovered from the auto accident and getting a little better with wegs each day. Don't know an answer to your remission question.

I've found that treating this disease is sometimes as much an art as it is a science. I was pretty sick before diagnosis in 1/11 and again with a flare/pneumonia/possible drug reaction in 2/12. My c-ANCA is still pretty high, but overall, I feel good. Fortunately, I'm retired and not subject to the stressors of working life, but I can't imagine going to work while the wegs dog is awake and active!

Keep us informed of your progress, and don't be afraid to ask questions. We all learn from them.

Pete

[annekat]

Light, I mentioned myself lurking, but I'm not sure Meg said she did. She just took a long time to get around to finding us!

[Sangye]

Hi Meg, welcome to the group! I also went awhile without a support group. Friends mentioned it but I had resistance to the idea. Most was due to fear. I was in such bad shape I thought it would take away the threads of hope I was clinging to if I heard from others who were having the same or worse problems. Part was also due to the feeling that Wegs had already taken over so much of my life that I didn't want to lose more time to discussing it, etc.... At some point the sense of isolation grew larger than my fear and dread that I joined and have never regretted it. This is a wonderful group.

I've been taking rtx since October 2009-- 5 rounds total. I have an uncommon reaction to it-- makes me extremely weak for 6-8 weeks. Most people do fine. It's worth trying if milder drugs haven't gotten you into remission.

[KathyB]

Welcome, Meg! I've been onboard since December and have relied on our forum buddies for so much. Lots of info mixed with humor and thoughtful insights. Hearing everyone's story should help you feel like you are among friends! I'm had two rounds of Rtx and didn't have any adverse reactions until my last set of tests which showed a low immunoglobulin level. My rheumy thinks it's related to Rtx. I don't know much more than that right now. My only other suppressant is 5 mg of Prednisone. Not thrilled with those side effects, but it's keeping me going. Again, welcome!!

KB

[HopeinTN]

Welcome Meg! Better late than never. I wish you well and hope you get the info on here that you are looking for. I was diagnosed in Oct 2011 so I'm fairly new. I've only been on Cytoxan so far, so I can't give you input on Rituxan, but you have come to the right place.

What part of Georgia? I'm in Nashville, tn.

Good luck!

Katrina

[alexciasmom]

Hello there... Nice to meet you. Sorry it's because of wg.