Hello!

[Emrenee88]

Hi,
I also am pregnant with WG, I'm 15 weeks. I posted looking for someone who might have been through it too. Maybe we can be scared together? I have not had any problems as of yet (hopefully it will stay that way) and am sorry to hear things are not going the same way for you. But I'm sure your drs will work out what's happening and fix it for you. You will certainly be in my thoughts. Please feel free to inbox me or just write on here, will be nice to have someone to share with :-) hope you're feeling better soon
Emily

[Barry Forshaw]

Hello. I'm new to the forum and yours is the first thread I've read.

My wife has Wegener's and just three weeks ago gave birth to my beautiful daughter. I can empathise with how little decent information is out there regarding pregnancy and Wegener's. Fortunately the pregnancy went quite smoothly other than the baby refusing to move out of breach position, so my wife had to have a caesarian section. Mother and baby are doing well now.

I hope everything goes well with you.

[annekat]

That's awesome, Barry! Thanks for sharing. It should be very encouraging to quite a few women on here, and their families and loved ones. Congrats to you both on the new baby!

[mishb]

That's wonderful new Barry.

Congratulations

Was you wife in remission prior to being pregnant, if not, what medications is she on........I'm sure the girls who are currently pregnant would be interested to know a bit more.

[Barry Forshaw]

Thanks for the comments. A bit more information:

My wife, Alicia, has Wegener's which stops at her chest - there is no major lung or kidney involvement. She had treatment with Rituximab which stopped almost 3 years ago and since then her drugs and have been stripped back until she only takes Omeprazole. She was taking Lansoprazole but that isn't recommended during pregnancy. As she had effectively been in remission for a while the doctors asked her to simply stop taking the Lansoprazole to see if she could cope without it, but after 10 days of horrendous indigestion and nausea she started on the Omeprazole.

Alicia has tracheal stenosis and has to go into hospital every 5 or 6 months to have her windpipe dilated. Other than that she sees her consultant every six months and that's it!

We were told that the most likely time to expect a flare was following the pregnancy when the body's hormones go back to normal but it's now 4 weeks after and everything seems fine so far - other than needing a full nights sleep!

[mishb]

I say it again - that's wonderful news Barry.

So no prednisone?

My fingers are crossed that everything remains as is .........and also that sleep will come to you both, very soon.

All the best to you and your girls.

[Alysia]

Thanks for the comments. A bit more information:

My wife, Alicia, has Wegener's which stops at her chest - there is no major lung or kidney involvement. She had treatment with Rituximab which stopped almost 3 years ago and since then her drugs and have been stripped back until she only takes Omeprazole. She was taking Lansoprazole but that isn't recommended during pregnancy. As she had effectively been in remission for a while the doctors asked her to simply stop taking the Lansoprazole to see if she could cope without it, but after 10 days of horrendous indigestion and nausea she started on the Omeprazole.

Alicia has tracheal stenosis and has to go into hospital every 5 or 6 months to have her windpipe dilated. Other than that she sees her consultant every six months and that's it!

We were told that the most likely time to expect a flare was following the pregnancy when the body's hormones go back to normal but it's now 4 weeks after and everything seems fine so far - other than needing a full nights sleep!

Hi Barry.
your story is great. i hope your wife will continue with her remission.
if she is breast feeding i think it is good for her, maybe because of the hormones.
i think I had WG before my last pregnancy, and as long as i was breast feeding i was feeling well.
welcome to the forum.
and to your lovely baby: welcome to the world

[Barry Forshaw]

So no prednisone?

Nope! Just the Ompeprazole. There were the usual things during the pregnancy like vitamin D and iron tablets because Alicia was borderline anaemic but she's stopped taking them now.

[annekat]

Nope! Just the Ompeprazole. There were the usual things during the pregnancy like vitamin D and iron tablets because Alicia was borderline anaemic but she's stopped taking them now.

If I'm not mistaken, lansoprazole and ompeprazole would both be acid reducers, taken for indigestion and the like. Sometimes these are taken with prednisone because it causes excess stomach acid. But since she is not on the real Wegs drugs like prednisone or any of the immunosuppressants, we would consider her to be in a drug-free remission, I would think! It's great that she is doing so well, and I hope the stomach problems go away soon!

[Barry Forshaw]

I think Alicia's stomach is damaged from the sheer amount of medication she was taking previously. Hopefully it will right itself but if that's the worst she will have to live with I'm sure she would take it!