First pregnancy - super scared.

[JillianDudo]

I was diagnosed with WG and end stage renal disease 7 years ago - I've been in remission for almost 4 years and my kidneys have improved a lot.

My husband and I did a lot of planning and talking to doctors before we decided to get pregnant - and we were told by all my doctors it would be safe.

I saw high risk pregnancy doctor last week and he had nothing but HORRIBLE news for me. He told me I should terminate my pregnancy or I'm going to die and possibly my baby. He said, "this pregnancy is going to be a real nail bitter for you" - he told me very awful things and I haven't been able to shake it since I saw him. He said for sure I'm going to get pre eclampsia - without a doubt.

I was on 50mg of Imuran before getting pregnant and have decided to be offof it until I'm 20 weeks. I am 13 weeks now and I feel great. My kidney labs are better than they ever have been.

I just want to hear about other successful or not successful pregnancies with WG.

Thanks.

[windchime]

Please read the following book, "Alicia - My Battle with Wegener's". It's available on Amazon. She is a member of the forum and her husband wrote a book about her journey with the disease and through her healthy pregnancy. http://www.wegeners-granulomatosis.com/forum/general-wg-chat/4022-wegener-s-pregnancy.html this is an excerpt from the book. Please don't let the doc you talked to scare you. I would definitely find another ob doc. Good luck.

[JillianDudo]

Thank you - I will for sure!

[Psyborg]

What a horrible thing to tell you. I'd look for another doctor as Cindy suggested.

[JillianDudo]

He's not my regular obgyn, he's one of the high risk doctors that are co-managing.

[JillianDudo]

Also, my sister went on a business trip to a medical school in Virginia and she met a lady there that had lupus and has been trying to get pregnant for 7 years. This lady finally got in to see one of two perinatal lupus specialist and told her, her medication is prohibiting cell development and that's why she's not getting pregnant. So as long as she temporarily stop Rx she'll get pregnant.

Super long story short, this doctor told her pregnancy have the ability to cure immune diseases. Now I don't know the specifics if it's temporary or what - but I kinda believe it. I'm 13.5 weeks along and ALL my lab numbers have been better than ever. Even without any medication (only taking prenatal vitamin). It's like I don't have kidney disease or WG. Definitely something I'd like to know more about and thought I would share with anyone interested.

[Dirty Don]

Right now, that doc is treading dangerous waters...that's the 'old' thoughts on the effects of WG. When I first started researching I thought I was a dead man walking. I found out the real schtick later on. As long as your current health is good or better, you and the baby will be fine with or without suppressants. Tho not pregnant, I questioned being around physically stressful situations and my pulmy said that as long as I ate well, stayed fit as possible, and kept up my drug protocols, and tried to keep clean in unclean situations, I would be just like anyone else out there...simply: we're all at risk for diseases all the time, just how you treat them. There is some research that suggests a pregnancy is good for one's health...don't even go there guys. Anyway, less worries makes for less stress which makes for a better response to your condition. Just keep on ALL your numbers. Best to you.

[Pete]

He's not my regular obgyn, he's one of the high risk doctors that are co-managing.

Sounds more like a medical malpractice ambulance chaser (oops - I mean attorney) than a doctor...

Hope all continues to be well with you and the little one!

[JillianDudo]

Thank you everyone for the responses. I finally tablecloth to my rheumatologist and he told me to never see that doctor again. He said that doctor obviously knows nothing about WG and has no ground to stand on saying those things. That definitely made me feel better!

[JillianDudo]

Finally got to talk to my *** not tablecloth lol

[annekat]

Finally got to talk to my *** not tablecloth lol That's funny.... you can edit your posts, too; just find where it says "edit post", click that, edit and save the changes.

I'm glad you got your rheumy's advice on that doc. The things that docs say who know nothing about WG are scary and sometimes even delay people's diagnosis! I wish there was a system for docs reporting each other, or that they'd at least straighten each other out on misinformation given, so the ignorant ones don't keep harming more people.

[JillianDudo]

I agree with you.

Thanks for the info on the editing :)

I'm new to this whole thing

[Yvonnea]

Huge Congratulations on your exciting news!
If you are on Facebook check out the page "Vasculitis, Pregnancy and Motherhood" It is a private group, full of positive stories and advice re. medication.
Best of luck to you for a very healthy pregnancy and delivery.

[JillianDudo]

I did request to join the group after reading that on someone else's post. I'm still waiting to be accepted.

Thanks!

[windchime]

Jillian, there have been reports on here where pregnancy has put wegs into remission. The body is a wondrous organism. If you search pregnancy you may find the threads. Again, good luck to you and the baby. Please keep us posted on your progress.

[Mel4]

Congrats!!! I have a 3 week old and was diagnosed while pregnant!! I was told several times by several doctors about the remission during pregnancy...Obviously that wasn't the case for me, but we are all different!! My little mam is healthy and happy:).
I had a lot of pulmonary issues while pregnant, but otherwise pretty good. It's nice to know there are others in the same situation, this site is a great resource for that!! Please feel free to reach out if you want to talk more about being preggers with wegeners!!!

[Miska]

So you should be about half way...still doing good? I was diagnosed two months after my baby girl was born. Only problem I had during my pregnancy was something called choloeostasis of pregnancy. This is where you itch all the time due to the liver acting up. Doctors say it was unrelated, I think deep down it was some how. Prayers to you and the little one!

[JillianDudo]

Yes I am half way now. So far everything is good. My blood pressure has been stable and my labs are still better than they have been since getting diagnosed. I've decided that when I start my third trimester I week start taking my imuran again, a low dose, maybe 50mg everyday just in case I do flare after birth. That's what I am most scared of, glaring after giving birth all I'm trying to avoid if possible. I'll keep you updated for sure.

[JillianDudo]

Another question though... anyone taken imuran and had an episode of pancreatitis? Or elevated liver enzymes?

[Allisonquast]

Thank you everyone for the responses. I finally tablecloth to my rheumatologist and he told me to never see that doctor again. He said that doctor obviously knows nothing about WG and has no ground to stand on saying those things. That definitely made me feel better!
All I can say is thank god your rheumy has some sense. What a terrible unnecessary thing to go through. Please make sure you keep us up to date on your pregnancy and the the birth of your little miracle!

[NicShaf]

JillianDudo,
Congratulations! Hope all is going well with you. I just wanted to tell you how much better this thread made me feel. I am 6 weeks pregnant, been off medication for about a year, and I've been super scared about what the future holds for me and my baby. I talked to my Rheumy a couple months ago, before I found out I was pregnant, and he seemed optimistic about my ability to have a healthy pregancy in the near future. Then, God sent my husband and I a little surprise! My GP was very optimistic as well when I saw her last week and told her I was pregnant, which eased my racing thoughts a little bit. I have been assigned a high risk OB, along with a regular OB, but haven't seen any of them yet. I have been trying not to stress about circumstances I cannot control, and reading what everyone here had to say really helped. Just another reason I love this forum.
Hope all is well with all of you!
Happy Holidays!
xoxo
Nicole Shaffer

[JillianDudo]

Congrats! Its definitely exciting and scary at the same time. I'm 29 weeks now and so far so good. I ended up going out of state to UCSF for my perinatalolgist, and she's amazing! She wants me to deliver at 38 weeks regardless if the pregnancy is perfect or not. She said the last two weeks of pregnancy are very hard on your kidneys and there's no reason to stay pregnant at that point because it's considered full-term. So I'm looking at the beginning of February - very happy and anxious and nervous about the possibility of a flare afterwards. But, so far all is good.

Good luck and congratulations!

[im so blessed]

To both of you you can do this!!! I was dxed at 16 and had to fairly healthy pgs .one at 22 and one at 26. I had minor flares around 4 months post delivery but every bit worth my healthy little boys. I did have preeclampsia, but docs no how to handle that. At least GOOD docs do :)Go to your appointments, get plenty of rest. Stay away from salt and drink lots of water AND have fun being pregnant!!!!

[NicShaf]

im so blessed,
Thanks for the encouraging words and sharing your experience. It's always nice to hear those things.

[Mel4]

Just checking in on the pregnant ladies?! How Are things going?


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[JillianDudo]

I'm doing good! I've got 10 days left until they induce me. My blood pressure and all my lab values have remained stable - for that I'm so thankful. I have a plan for after birth to get back on my meds and routine labs often to make sure I'm not going to flare, but if I do, we'll catch it early. :)

[Mel4]

Great news!! Thanks for sharing and keep us posted.. I know those last days are crazy!!


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[Velma]

I am so glad you wrote in.. because when I found out I was pregnant I was in remission too and was taking the Methotrexate and bactrim etc as a maintenance.. but wha-laaa surprise pregnancy. Okay first of all get a new doctor. My doctor literally threw his hands in the air and said "this cannot be!" and stormed from the room. I found a new doctor and OB specialists who followed me week by week and said the option was always there for termination but the fetus was perfect. I had my first ultra sound at 22 days and her little heart was just pounding away! I just knew in my heart that God had given me this baby and I had to try. I just HAD to try or I would live with the what if's for the rest of my life. I also knew in my heart that there would be issues to deal with but personally I was not one to give up easily and if there was a chance to have a healthy baby then it was worth the risk.

I am not going to lie to you.. the doctor was right it will be a "nail-biter" but if you do your homework and stay on top of what is happening to your body, to your baby, and what could happen then that will give you peace of mind to make the decisions you need to make. Shoot, my own mother in law gave me grief every time I saw her about stopping the pregnancy but I just prayed it through and with every appointment things were good and I ended up giving birth 10 days early with a perfect baby girl almost 16 years ago. I did not flare for 7 years after she was born either.

Doctors cannot fortell the future. If your labs look good and the baby is fine then why not try? Take one day at a time and stay on top of how you feel and your labs. Things might get a little harder as time goes by but with a supportive team of doctors you will get through this. Find a good team of doctors who will help you. Do your homework and know what to expect but say in your heart.. God gave me this baby for a reason.. and I will not give up without a fight.

I have been in your shoes, sweetie, it is hard but I will be praying for you and your baby. Please keep me up to date. Good luck. V.

[Velma]

Nicole you are a living example of what I posted just a minute ago.. having a supportive team of doctors will make a world of difference. I went through the same thing as you and did not flare for 7 years after having my baby. Just stay on top of your labs and doc appointments, ask questions, and do your own research. Don't let what they tell you be the final answer. Push them for more help and more advice if you need it. After all they are being paid to help you. Make them do it! I love this forum too! Take care and congrats on the baby news!