Hello!

[tmesis]

Hi everyone,

I've just discovered this forum – what a fantastic site! I can't believe I didn't come across it sooner.

My story is similar to a lot of yours. I was diagnosed with Wegener's in 2005 when I was 23 years old. I'd had joint pain, anaemia and swelling of my left leg for several months before disease eventually hit my kidneys. I developed rapidly progressive glomerulonephritis along with retroperitoneal fibrosis and was rushed into hospital. They treated me with dialysis and plasma exchange 3 x weekly and a hefty dose of cyclophosphamide and prednisolone, and I achieved remission after about a month. Since then I have remained in remission without the need for dialysis. I was on mycophenolate mofetil up until about a year ago when I asked to switch to azathioprine. I now take 75mg azathioprine and 5mg prednisolone a day.

I'm 31 years old now and 21 weeks into my first pregnancy. Everything was going well until mid last week when my left leg started swelling again and I've since had really bad joint pains. I've not had a flare up of the illness since the initial diagnosis, but these symptoms feel very reminiscent of the original symptoms I had in 2005. Blood tests showing all normal values so far, and kidney function is good, but they didn't check for ANCA until today (waiting for results now – should know in a couple of days – got fingers firmly crossed).

There's not a huge amount of literature available about pregnancy and Wegener's – and the little that does exist is not hugely encouraging. I'd love to hear some stories from other people who've been pregnant or who know someone who has. I'm finding it all quite terrifying, to be honest!

[drz]

Some people have had children after their diagnosis of Wegs and hopefully some readers here will see your message and reply here too. If you were in good remission for some years every thing should be OK if you still have enough kidney function left to do the job. Pregnancy will put an extra strain on kidneys but your doctors will be able to evaluate this and advise you as to what is happening and needed now.

[annekat]

Welcome to this great forum! Remission in one month, wow! But sorry to hear you are now having issues while dealing with a pregnancy, too. Can't really add to drz's advice, and am unfamiliar with the kinds of pain you are experiencing. But I'm glad you found us and will be interested to hear what new information you are given.

[tmesis]

Thanks for the replies :)


If you were in good remission for some years every thing should be OK if you still have enough kidney function left to do the job.

Funnily enough I've had a slight improvement in kidney function with the onset of pregnancy. Just hoping it keeps up!


Remission in one month, wow!

It was very quick and very unexpected! I remember at the time they were hoping that I might achieve remission in 3 or 4 months. The plan was to remove my temporary dialysis line and fit a permanent one, and to do a biopsy on the RPF. But a couple of days before the biopsy it was cancelled as a scan showed the fibrosis had vanished. The RPGN, which had been the worst case my kidney consultant had ever seen, improved around the same time. So instead of putting in a permanent line they took out my temporary one and sent me home, and I've not had to spend a night in hospital since. :)

[Dirty Don]

Welcome, and try this thread, search it on here...good story, may be helpful for you.http://www.wegeners-granulomatosis.com/forum/images/icons/icon1.png Wegeners and Pregnancy

[mishb]

Hi Tmesis and welcome to the group.......it's about time you got here :flapper:

Gwen on this forum has had three beautiful daughters since being diagnosed at the age of 15.
I hope she sees your post and can help you.

I wish for you, the best of health during your pregnancy and look forward to hearing of your progress.

[tmesis]

Thanks for the replies and the heads up to Gwenllian - her story (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/394-wegeners-pregnancy.html) is a fascinating read. I have a small update - some of my results are through and they're not what I expected. Inflammation markers (ESR and CRP) are normal but now the kidney function has dipped a bit - creatinine levels up to 128 from 111 umol/l last week. ANCA results going to take a couple more days to come in.

Am waiting to hear back from kidney consultant and trying not to panic. I've had dips before that were much worse than this. Can't help but worry though.

Edit: ANCA result just in and it's negative... colour me surprised/confused/not a little relieved. :confused1:

[Mel]

Hi tmesis,
I haven't been on this forum in quite some time but I was resting tonight and decided to go on and see what's up. First of all, congrats of your pregnancy! I am also pregnant and I have wg. I am 29.5 weeks at the moment. So far I have had a great pregnancy and I have been feeling great. I am keeping my fingers crossed and praying that it stays that way. I don't really know about the leg swelling. Could it just be regular swolleness from pregnancy? Some people really swell up. Are you seeing a high risk doctor? I hope that they can give you some insight. If you want to chat more, you can message me!

[Debbie C]

Welcome to our group tmesis and congrats on your pregnancy and your anca tests coming back neg. Unfortunately you can't solely rely on anca tests. Mine kept coming back neg for almost a year after my biopsy had confirmed I had wg. Hopefully Mel can help you since she going thru the same thing . Good luck and I'll say a pray that you both have healthy, happy babies !!

[Alysia]

Hi and welcome to the forum. I think that during my third pregnancy I was already having WG but was not diagnosed yet. I had skin rash, nose issues and coughing. and terrible fatigue before pregnancy. during pregnancy, my symptoms lessned. I felt much better. maybe something in the pregnancy was good to my systems. I hope that your pregnancy will help you feeling better.

[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 :thumbsup:

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 :hug3:

[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!

[annekat]

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! I suspected that.... some docs, including mine, have been remiss about prescribing or even mentioning acid blockers while on high dose pred. I had to learn about that on here. I get by OK with OTC, generic versions of them. I guess I was lucky. I sure hope in your wife's case there is not permanent damage. I presume the stomach tissues can heal and regenerate themselves with time, and I hope that is the case with her!

[tmesis]

I'm a little late in replying to this thread but it's 3 years on and I am pregnant again and I thought other potential mums-to-be might like to know the outcome. I ended up maintaining remission throughout my pregnancy in 2013 and beyond with no complications. My daughter was born at almost 42 weeks (induced, only because she was overdue; 'normal' delivery) and she's now a healthy 2.5 year old.