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