Gwenllian
09-17-2009, 07:13 AM
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. :confused:
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 :D
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. :confused:
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 :D