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I thought about more pred...i feel like if I say to my dr he will tell me to do it. I feel like Im getting worse with the coughing....sputum...such a word!! But I have been really struggling with the...

Great news!! Thanks for sharing and keep us posted.. I know those last days are crazy!!


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Just checking in on the pregnant ladies?! How Are things going?


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The ear ringing is borderline unbearable!!! Is that Fro, fluid? I take Benadryl at night to get some relief. Any other suggestions? I'm getting 2nd rituxin treatment as I type!


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Congrats!!! I have a 3 week old and was diagnosed while pregnant!! I was told several times by several doctors about the remission during pregnancy...Obviously that wasn't the case for me, but we are...

Well, my little man is here:) I was due on August 11, scheduled to induce on at 38 weeks on July 30th because I was so short of breath, and went into labor on my own on July 26th! The delivery...

I had chronic ear infections years ago and went on and off of steroids and eventually had tubes put in. I was 30...which seemed kind of odd. Itwas a T tube that stayed in for years. I have carried...

Thank you;)

Thank you all for sharing! I'm glad to know that the dx is done in a variety of ways. They can not do a CT scan or MRI b/c of the baby...so that might put some more things in perspective once I get...

My doctors are disagreeing on whether I need a lung biopsy. From what I've read I understand that a biopsy is the only "official" way to prove Wegener's. But, with blood tests and symptoms two of...

It is so crazy how many different opinions and ideas there are out there. I am very interested in how many people were actually biopsied to get diagnosed. Two doctors say that because of the...

Thank you:) It's crazy that this is so hard to diagnose! Looking back I have to tell myself not to get mad that I was seeking treatment for things and not one of the doctors even mentioned or...

Thank you! I just picture this little 2 week old baby sitting with someone while I go for infusions and it makes me sad! There has also been talk of a lung biopsy and days in the hospital...eek! I...

Thank you! Yes, the doctors have made sure I know that my pregnancy and Wegener's is not common. Of all the doctors I see I rank them from scariest to least scariest...and some of them make a huge...

:thumbsup:

Thank you:) I'm really hoping that what you say happens!!!

Thank you! It's funny I think about leaving my little baby with someone while I go for treatment...I am hoping it's not too insane that I will be able to enjoy. It's such a special time! Thanks:)

Thank you! It's amazing the difference the meds have made! This community is so welcoming!

Thank you! I think I might have made myself sound more positive than I am...fake it till you make it?!?!

Thank you! I am due August 4th. All docs have told me to stay open to the idea of going early if things take a turn...I will update! I have blood work this week so I'm always a little anxious....

Thank you! I am so glad to share and read about others...thanks for your kind words:)

When I read up on the disease, it seems I have had symptoms for years. A "broken" foot, chronic ear infections and ear tubes at 30, random skin things the dermatologist called binary contusions...I...

Thank you for your kind words:) I will put my story on the new members page. Everything has been such a whirlwind I was very appreciative to stumble on this site! This is my 4th little one!!! ...

Thank you! I will check that out!

I am now 8 months pregnant and was officially diagnosed 2 weeks ago. Anyone else have this experience? I'm on 40 mg of prednisone and awaiting treatment when the baby is born. Just curious if...