Having children when diagnosed with WG

[Elena]

Are there anyone here who've had a child after getting the diagnosis and treatments? Or at least thinking about having one?

My boyfriend is worrying a lot about how our future is going to look like, and I'm having a hard time answering all his questions.. I mean, we're not planning on having our own family for at least another 5 years or so, but it's kind of nice knowing a little about what we can expect..

First of all he is worrying that the cytoxan I've gotten before and other drugs will harm our future children. And of course we're worrying about my health as well, but I know that I'm going to be really closely looked after when I'm pregnant.
I know I probably should ask my doctors about this, but I feel weird doing that at such a young age, especially with my mum there. I've never really had to think about how WG is going to affect my future before, but now that I've gotten a boyfriend whom I really want to spend my life with, I can really see how much pain my disease, and the uncertainty of it, is putting him through..

Hope there's anyone out there with some knowledge on this subject..

[freakyschizogirl]

My Rheumy talks openly with me about what drugs i'm taking and those he is reluctant to give me because i'm only 25 and of child bearing age, especially since i havent had any yet either. And this subject worries me too, Best person to ask is the medical professionals...but i'm sure a few people on this forum will have some experience with this subject.

[Daggar]

Advice given to us for Holly...

Add a gynaecologist to your "team" of doctors. They should be involved with treatment concerns and will give direction on how to "limit" fertility issues and/or plan for the future.

[NicShaf]

Elena,
When I was diagnosed back in December, my husband and I met with a fertility specialist when I got out of the hospital. We had many questions about our future and starting a family. I have heard of women having children after being diagnosed with Wegs, but it is a high risk pregnancy from the start, so if you are thinking about this in your future, I would see a fertility specialist as soon as possible so you know exactly what your options are.
We were given the option of preserving embryos...if you have already taken Ctx, I don't know if this is still an option, the idea with me was to harvest my healthy eggs before the meds. I chose not to put my treatment off and go through this invasive and costly procedure.
We were then told that if my body recovered from the Ctx and I was drug free and in a solid remission for at least 2 years, we could try and conceive naturally. My understanding is that Ctx could affect your eggs, this is something to bring up to your doctor.
My husband was very supportive in my decision to forgo the embryo preservation, and we take things day by day, that’s the best anyone can do. Adoption is another option that my husband and I talk about quite a bit, there are always babies in the world that need loving parents.:)
Fertility has been brought up quite a few times that I've seen in the past couple months….a couple times by both my husband and myself…you may be able to find other threads that talk about it too. Hopefully someone else has more helpful advice for you as well.
Best of luck to you!

[Elena]

I never got the option of preserving embryos.. I was 16 when diagnosed and fertility was never much of a topic amongst my doctors. I was there was some risk of infertility with cytoxan, but as I was so young this risk wouldn't be very high.. That's all the information I really got. I got the impression that cytoxan was only risky because it could put you in menopause, not that it would damage my eggs..

I haven't gotten any cytoxan for more than a year and a half now, cause they switched me to Rituximab. Which I've gotten the impression isn't an issue with fertility? I will try to talk to my doctors about it. I've just been moved to the adult ward and not sure really who my primary doctor is. Have never been to a gynaecologist before, but maybe it's about time I mention this as well.. There is just so much to keep track of.

[Jack]

Since I am male I probably react slightly differently to this subject. I have two daughters and neither are mine genetically speaking, one being adopted and the other conceived by AI. I have never for one minute considered them to be anything other than my own and love them both dearly. The inability to conceive is very common indeed for a number of reasons, but there are alternatives and you would not be alone if you had to resort to one of these. However, the first move has to be finding out the exact position that you are in and only a specialist can tell you this.

[Elena]

I do not doubt at all that I would feel exactly the same about a child that I adopted as I would if it were my own : ) Still I want to try everything I can to get pregnant on my own. I realizing I need to figure this out by getting an appoinment with a specialist. Thank you for all your answers

[Sangye]

Elena, ctx is chemo and therefore potentially dangerous to the eggs and sperm. Chemo causes DNA mutation. Rtx is not chemo and does not have an overall toxic effect to the body. It doesn't affect the DNA.

I'm wondering if any of your docs have mentioned shutting down the ovaries with lupron. That's supposed to be somewhat protective of the eggs. I don't know anything more about it.

[Daggar]

Lupron was mentioned to us for Holly but due to her being a "late bloomer" (heredity) they've closely monitored her to make sure that she stays that way while on cytoxan.

The cytoxan/pred combo will also delay it and they're hoping that she won't need another drug.

[Elena]

I've never heard Lupron mentioned by my doctors. I think I read somewhere that being on birth control pills could help protect the ovaries though, does anyone know anything about that?

[Sangye]

I've never heard that. But I do know that Wegs makes you 23% more likely to develop blood clots. Birth control pills also increase the likelihood of clots. Combining the two means your risk of clots is quite high. I suggest you discuss this with your gynecologist, and make sure s/he knows about the WeCLOT study demonstrating the higher risk of clots in Weggies. Another form of birth control is probably a good idea.

[Elena]

Do I need to go to a gynecologist with knowledge about WG for this? I've never been to a gynecologist, I just gets prescription by the schoolnurse.. If I just make sure to mention this? I need a new prescription soon anyways, so I'll take care to mention this then.. I've told my doctors I'm on the pill before, so at least they should know about it..

[NicShaf]

We brought up Lupron to my Rheumy before I started my treatment to put me into a drug induced menopause, the idea was to stop my cycles to protect my eggs from the damages that Ctx may cause. I don't know if this is still a viable option if you have already gone through Ctx treatment. You should ask you're doctors if there is some way to test your eggs? I'm surprised that none of your doctors ever brought up fertility before, even if you were 16 at diagnosis, they had to think that this might cross your mind in the future.
We have a family friend who was diagnosed with Breast Cancer at 21. She went through 5 years of chemo, and went into remission. This past October, she gave birth to a healthy baby boy that her and her husband conceived naturally. I'm not sure how much different her chemo was from Cytoxan, I know it is a stronger dose, but the point of my story is that it's not hopeless, but I would definitely get a good Gynecologist on your team so you have the best chance possilble.

[Jack]

It is things like the association between blood clots and Wegener's that the average Doc without experience of the disease will be unaware of. It then becomes your job to speak up and educate them. Difficult at first I know, but it gets easier with practice. :wink1:

[NicShaf]

Since I am male I probably react slightly differently to this subject. I have two daughters and neither are mine genetically speaking, one being adopted and the other conceived by AI. I have never for one minute considered them to be anything other than my own and love them both dearly. The inability to conceive is very common indeed for a number of reasons, but there are alternatives and you would not be alone if you had to resort to one of these. However, the first move has to be finding out the exact position that you are in and only a specialist can tell you this.

I think it is slightly different for a woman, we always dream of being pregnant and having children of our own, usually from a young age, but it is nice to hear such a positive perspective from someone who has adopted. Being a parent is so much more than "having" a baby, and I think it is easy to lose sight of that.

[Jack]

Women different to men? Surely not! :ohmy:

:wink1:

Sorry.

http://i25.photobucket.com/albums/c56/1955diesel/getmecoat.gif



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[freakyschizogirl]

http://i25.photobucket.com/albums/c56/1955diesel/getmecoat.gif - - Loving that!! Made me chuckle.

Elena, I've had problems with contraceptives before diagnosis. First lot just wasnt any good, second lot gave me headaches and the third, given my bmi, would've put me at a high risk of clots. So i was basically told my only options were a coil or just normal barrier methods. I was shocked in this day and age there was nothing "suitable" for me to use.

[Daggar]

Hey Jack, are we in over our heads here??:unsure: Well, maybe I am!:blushing:

Birth control was also mentioned at the time of diagnosis for Holly because it can also help protect but like Sangaye mentioned there may be "complications"... but then again... what isn't complicated about WG?? Yikes!!!

You need to see a gynecologist to set your mind at ease on which way suits your personal situation. I'm not sure how the hospital system works in Norway but here in Calgary, Canada they have a "team" approach when it comes to diseases that effect different parts of the body. When Holly was first diagnosed they brought in specialists in all areas that were of concern and one of those was a gynecologist. I'd talk to your current WG doctor and have them recommend a gynecologist with WG experience or someone they would work closely with so there is communication between the two.

[Sangye]

Unless you go to a major center, I don't think it'll be easy to find a gyn with Wegs experience. However, I don't think it's that important. They are all familiar with chemo for cancer, including ctx. It's been around a long time. They wouldn't necessarily know about the WeCLOT study, though, which I why I suggested that you bring it up. The link between Wegs and clots will be a major factor in any decisions about birth control.

[Elena]

I talked to my mum and we both agreed that I should ask to see a gynecologist the next time I'm scheduled for a check-up. If everything works out and I don't get sick that'll be in about 3 months. I was in last week to have a new bronchoscopy and they said everything looks real good. They started me on another round of Rituximab as well, just to be on the safe side of things, so now I'm hoping things will stay good for me. They're probably going to start decreasing my pred as well if I keep doing this well.

They also talked about maybe changing me from CellCept back to Methotrexate or Immuran. They aren't sure if the CellCept is good enough, because I've only been taking it while doing Rituximab as well. And since studies show that CellCept don't work as well as other meds on it's own, they want to consider other options.. So I'm wondering if anyone knows what meds have the most side effects? I'm thinking that if I'm going to change meds, I want it to be a med that I can stay on for years (that's if I'm not lucky enough to quit taking any meds) and also while being pregnant. I don't like the idea of changing meds again later if I want to get pregnant, cause I'm thinking that changing meds could risk a flare if its not successful.. By the way, are there any meds that you can take while being pregnant?
(I know I'm thinking pretty far ahead of me now, but I want to be well-informed and prepared.)

[NicShaf]

I was told no meds while pregnant, and drug free remission for two years before considering pregnancy. Good luck finding a medication that works for you. I'm glad to hear you talked to your mom about everything, its a big life changing decision, and it's good to have everyone on the same page.

[Sangye]

I read an interesting article today about pregnant women who are diagnosed with breast cancer. They said the growing trend is to treat the cancer while still pregnant. They use ctx (in cancer doses, of course) because it's too large to cross into the baby's blood supply. I thought that was interesting. From a holistic perspective, it's all pretty horrifying to me, but at least it gives women a choice.

Here's the article, in case it helps: Pregnant with cancer, healing for two - TODAY Health - TODAYshow.com (http://today.msnbc.msn.com/id/41874748/ns/today-today_health)

[NicShaf]

Wow, how scary for that mom-to-be...but an inspiring story. I hope everything goes well for them.

[Kathie28]

Being able to have another child has been a big factor for me and my doctor when choosing medication. We are trying Rituxin first instread of ctx to prevent fertility issues. However, getting pregnant while that is in your system is not an option. I was told that Immuran is safe to use during pregnancy so that is our goal for me once things are under control.

[Brooke]

I hope to have another baby one day too. I will be 30 next month and I have a 4 yr old boy right now.

[Daggar]

I was sent this link when Holly was first diagnosed..... it is from July, 2010 and I'm not sure if anything has changed from then about the "fertility" issue but it is the only drug that claims not to effect fertility.

http://www.sciencecentric.com/news/10071546-new-therapy-vasculitis-may-help-patients-avoid-infertility-cancer.html

[Sheena]

I have also been told that Immuran is safe to continue taking while pregnant. I have been on immuran for quite a while now. I have an appointment with my Dr on the 21st of this month and will be asking a lot more questions about pregnancy as I have reached the stage where I want to start trying to have a baby. I will report back what I find out. :-)

[Kathie28]

I hope to have another baby one day too. I will be 30 next month and I have a 4 yr old boy right now.

We have a one year old, Wegs hit me when he was a few months old. Right now I am just greatful I finally feel well enought to enjoy being a mom. I am hopeful this gets under control enough that we can try for another one but I actually get a little nervous about it too. I worry about getting too sick to care for them. 30 is still young so you have plenty of time!!!! I'm 39 so time is not really in my favor.

[malin]

When I was diagnosed at 16 no one told me about the risks related to fertility, wasn't told I should use contraceptives or that I shouldn't get pregnant, it was only when I was 19 and got moved to the "adult" Rheumy clinic that I was told all this. Luckly I had already started with the pill for other reasons... :p

My current Rheumy says that my pills, (mini pills calledCerazette) will help protect my ovaries. I'm "only" on mtx but one of my biggest problems isn't if my fertility is ok or not, its more down to being able to be off my meds long enough before being allowed to even try to get pregnant and then to be able to stay off the meds while I am pregnant. At the moment, I can't see this happening so me and my partner have already discussed adoption, only problem with that is it takes years and costs an awful lot of many which we don't have and wont have for a long time in this economical climate. Such a rubbish world at times :crying:

On a happier note, I'll just have to stock up on cats n dogs in the mean time!
Just got the "go-ahead" from my partner that as long as we can save up the money, I'll get my very own little kitten later on this year! :D

[Brooke]

Thanks Kathie, I feel the same way. I am so happy I have one child and that I am feeling well to take care of him and do fun things with him. I am also scared about having a flare if I had 2 kids to take care of during that time. I have a wonderful husband that of course would be helping out but it would still be very difficult.

[Sangye]

Malin, hang in there girl. The great thing about Wegs is that it can change quickly. You might improve faster than expected. Glad to hear about the kitten on the way. :smile1: