Wegeners and Pregnancy

[Gwenllian]

Hi

I just thought i'd post my experience on having Wegeners, and pregnancy, in case it's of any help to anyone planning a family? I hope it helps.

I was first diagnosed with Wegeners when I was 14 years old. I had a severe flare up, with flu like symptoms, and it affected my lungs and kidneys and I nearly died! Very scary, but in the end, I was put on Cyclophosphamide and Steroids, and I came through the other end. I was then on Aizothioprine and Methotrexate for years. I was told that there was a chance that I may not be able to have children, as the chemo had caused my periods to stop for a long time, and the truth was, when I asked doctors about my fertility, they simply did not know if I could have children in the future....

When I met my now husband, Craig, I was honest from day 1 that I was unsure if I could ever give him children. He was always extremely supportive, and we said that we would see how things go.

It took 2 years of trying, before I fell pregnant in October 2003.

By the time I was 20 weeks pregnant, i developed severe pre eclampsia. I'm told that this is quite common with weggies, but I have to stress, that I was not diagnosed or treated for active wegeners at this time, even though it was later discovered that I was actually flaring up...this wasn't diagnosed properly until early 2007!

My daughter was born prematurely as a result, and I spent about 2 months in hospital struggling with high blood pressure, and the baby was failing to thrive. She was born at 33 weeks weighing 3lb6oz.

I had pre elcampsia with my second too, but before I had my third 8 weeks ago (lol, yes, i've been busy!!!), I didn't have pre eclampisa, and I think this is because I was previously treated with Ritixumab which kicked the wegeners into remission.

I was also given more Cyclophos, but i was given 'ovarian protection' injections in my stomach, to induce an early menopause to help protect my fertility when I was having the cyclophosphamide. This in effect induced an 'early menopause'.

It was all very scary, but 18 months later, I fell pregnant again.

This latest pregnancy ran a lot smoother, but as with the other two pregnancies, I subsequently flared up a few weeks post delivery.

This time, because I have a tracheal stenosis, I had more granuloma grow on my stenosis, which pressed onto my esophagus, and onto a major nerve in my neck which made my pulse rate and bp plummet. BUT, onwards and upwards, I had my ritixumab today, and so I should be back on the straight and narrow again soon.

Good luck to those hoping to start/expand their family. It's worth every second imho.

xxx

(got to go, baby's crying!!) x

[Doug]

A beautiful- and hopeful!- story. I have to admit, I teared up with happiness for you, and because there are others- Luce right now- who will benefit from this in depth description of how you came to be a mother of three, despite WG! Bless you and may your girls grow fast and strong! This is at least a 10 smiley face story because WG wipes out hope, and this story shows how hope can be restored! + six!

[Sangye]

It was truly a great story to read. I hope Andrew can make it a "Sticky" since it addresses so many concerns of younger Weggies.

[Doug]

Great idea, Sangye! Look how many young people have come onto the forum lately. It's bound to be the biggest single question they'll have as the grow and start thinking about having families.

[Sangye]

I like the Stickies. I still giggle remembering when you tried to "friend" Sticky and how happy that made him (her?).

Which makes me think of the old "I Love Lucy" episode where she thinks she doesn't have any friends, so she joins the Salvation Army and sings "We are Friends of the Friendless, Yes We Are!"

[Doug]

Yeah, leave it to you to bring up my most embarrassing moment on this forum! Dang Sticky never did reply!

[Sangye]

No, no, don't be embarrassed. It makes me giggle because it was so kind of you to include everyone. I mean, can you imagine if a member had the screen name "Sticky?" Might make me hesitate to shake hands, ya know?

[Luce]

Thank you so much Gwenllian, I will show your post to my partner as to us it is vital we collect fact and accounts of what others have experienced in order to help us make an informed decision.

My partner is terrified that I will become sicker if we have a baby and he's not sure he could cope with looking after a newborn baby and a sick wife to be, which to be fair is asking an awful lot of him.

[jola57]

Gwenllian, what a wonderful sound that cry is. Truly and inspiring story which I hope is posted in a very visible sticky. I have just told your story to a girl who was very worried about being able to get pregnant because of Wegs, her doctor said her chances are nil. She is much more hopeful now.

[Doug]

No, no, don't be embarrassed. It makes me giggle because it was so kind of you to include everyone. I mean, can you imagine if a member had the screen name "Sticky?" Might make me hesitate to shake hands, ya know?

Ew! Or leave anything behind when I left the room...! Yeah, a member with that name would be like "Pigpen" in Peanuts, I guess.