Diagnosed a year and a half ago

[Mel]

Hello everyone! I wanted to introduce myself. I was diagnosed with Wegener's in April of 2009. I had been sick for about 6 months prior with mostly sinus problems. By February I had no energy and I was struglling to make it through the day. By March my muscles were hurting so badly that I had to take Advil everyday just to get to work. I was walking like somebody much older and I was only 27! By the end of March I ended up in the hospital twice (the first time they sent me home with antibiotics because they thought I had atypical pneumonia), finally I ended up in ICU on oxygen because I couldn't breathe. I ended up staying in the hospital for 2 weeks, while they tried to figure out what was the cause behind my extreme illness. Finally after running the ANCA test, they realized I had wegener's. I am so thankful that they figured it out and that I was treated aggressively right away. I took Cytoxan through IV for 3 months with prednisone and now I am on prednisone and methotrexate, but am tapering off (only 2.5 mg of prednisone and .4ml of methotrexate) I am so happy to be feeling well and I pray that I will stay this way. Since I am young and married I still hope that I can get pregnant and have children. Has anyone had a successful pregnancy after being treated the way I was? I would love to know!

[Sangye]

Hi Mel, welcome to the group. I assume you're a Melanie if you're trying to get pregnant someday!

I'm so glad your treatment is working well. While ctx can cause infertility, there are some members on here who had it and were able to conceive. Pregnancy can cause Wegs to flare, so you'd want to make sure you are very solidly in remission before becoming pregnant.

[drz]

Hello everyone! I wanted to introduce myself. I was diagnosed with Wegener's in April of 2009. I had been sick for about 6 months prior with mostly sinus problems. By February I had no energy and I was struglling to make it through the day. By March my muscles were hurting so badly that I had to take Advil everyday just to get to work. I was walking like somebody much older and I was only 27! By the end of March I ended up in the hospital twice (the first time they sent me home with antibiotics because they thought I had atypical pneumonia), finally I ended up in ICU on oxygen because I couldn't breathe. I ended up staying in the hospital for 2 weeks, while they tried to figure out what was the cause behind my extreme illness. Finally after running the ANCA test, they realized I had wegener's. I am so thankful that they figured it out and that I was treated aggressively right away. I took Cytoxan through IV for 3 months with prednisone and now I am on prednisone and methotrexate, but am tapering off (only 2.5 mg of prednisone and .4ml of methotrexate) I am so happy to be feeling well and I pray that I will stay this way. Since I am young and married I still hope that I can get pregnant and have children. Has anyone had a successful pregnancy after being treated the way I was? I would love to know!

Great story of successful diagnosis and treatment. Thanks for sharing it cause it is encouraging and builds hope.

[elephant]

Hi Mel and welcome. Thanks too for sharing! Yes, I agree with Sangye ....need to be in remission before you get pregnant.

[Mel]

No, my name is actually Melissa, but so many people think Melanie when they hear Mel! Thanks for writing me. It is great to know that there is support from people who have had to deal with this disease as well. I am told I am in remission, but I am still taking meds so I am not sure if that counts as a complete remission. I am a little bit nervous to go off my meds because I am scared of this disease returning. On the other hand, I am really looking forward to the day when I can be medication free again.

[elephant]

Melissa, I was told that I was in remission June 2010, I was diagnosed July 2008....I don't know either when they will get me off the cellcept and Bactrim. As of now I am tapering off Prednisone. Once in remission some Wegeners specialist they like to keep their patients on immunosupressants for two years and then get them off.

[Jaha]

Mel,

Welcome, seems like it takes forever to finally feel a little normal after the dx of Wegener's. I hope that when you are ready to have a baby that everything will go well for you. I look forward to hearing more from you and pray you stay well.

Jana

[Joy]

I was very interested to read your intro-my daughter was diag early Nov. w/ Wegeners @26. We are still very much in the gathering info phase , she is on 60mg. of pred. she has been healing from her lung biop. & will start treatment soon. Her pulm. has rec. cytoxin IV -he wants to knock it hard, she has a sch. appt . in a wk. w/ a Rheum. @ Duke who was involved w/ the Ry. study & specializes in WG & women & autoimmune diseases. ( We debated 1 of the main clinics but this is driveable for us, so will start @ Duke.) She has had great care & has confidence in her pulm. but is very confused abt. treatment as she is anxious to hear abt. other women who have WG & have had children since diagnosis. The Rheum. @ Duke believes Ry. is the way to go for those concerned w/ fertility. She has been married almost 3 yrs. & they were planning a family soon. Her weg. manifested in her lungs , she went to the emerg. room w/severe chest pains & was diag.w/ the poss. of weg. w/in hrs. It was def. confirmed w/ a lung biopsy mid Nov. Going in remission is her priority but she wants to make educated choices abt. treatment. There seem to be so few women in her age group & every persons story & symptoms so different. I feel competely overwhelmed & so concerned for her & what this means for her future. I would love to hear from anyone w/ questions she needs to ask & suggestions , as well as anyone who has experienced the fertility issues. I am b/g to worry that she has been only on the pred. since her biopsy & that she needs to quickly b/g her treatment. Yet want her to be able to make the best choice for her! Help...

[pberggren1]

Sounds like she should be on Cytoxan and Pred. But I am affraid that oral Cytoxan is the better way to go than IV. She should be on Cytoxan right now. Wegs can do damage fast and sometimes irreversable. There are some other women on this site in the teens to 30's age group. So I am sure they can give their advice as well. But with Wegs if affects everyone different. Wegs is a very scary disease to deal with in the beginning, but with support and propper info it gets easier. This is a great site for info and support. Please keep us updated. We are one big family here.

[Sangye]

Hi Joy, welcome to our group. I'm sorry your daughter has this disease at such a young age. I'm not familiar with Wegs specialists at Duke. What is the rheumy's name who was involved in the rituximab (rtx) study? The best thing is to travel to a larger center. This thread discusses that option and the other options as well, and some more great info: http://www.wegeners-granulomatosis.c...need-know.html

The use of rtx is becoming more mainstream, especially since it doesn't affect fertility. But you really need to get all sides of the issue. My Wegs doc at JHU (Dr Seo) says it's too early to know the long-term risks of rtx since it has only been used in Weggies for about 5 years. He uses it more conservatively in young people. Even for me (almost 47), he says he wants to limit the use. Having said that, rtx got me into remission and ctx never did.

We have several mom and dad members who can offer experience and advice regarding treatment and parenthood. Mine is limited to my dogs, so I can only help you with house training issues.