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September 04, 2010, 07:57:29 PM
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Three products now FDA-approved!
- Cinryze, approved to prevent HAE attacks.
- Berinert, approved for treating acute facial and abdominal HAE attacks
- Kalbitor, approved for treating acute attacks in patients 16 yrs and older. The product is delivered through subcutaneous injections

Please contact the HAEA's Patient Services group for more information

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|-+  HAE Message Forum
| |-+  Pregnancy and HAE
| | |-+  Danazol and Trying to Conceive		 « previous next »
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Author Topic: Danazol and Trying to Conceive  (Read 190 times)
hillaryfaye05
Jr. Member
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Posts: 11
« on: May 10, 2010, 05:08:33 PM »
Ive been diagnosed with HAE for three years now. I am currently trying to conceive. I am on Danazol 200 mg a day. My doctor wants me to remain on Danazol until I get pregnant, then he will put me on Cinryze (because my insurance will only pay for Cinryze IF i become pregnant) My question is, has anyone out there ever had problems getting pregnant while on Danazol? Ive been trying almost a year now with no luck...
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Marielle
Jr. Member
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Posts: 10
« Reply #1 on: May 16, 2010, 08:38:52 PM »
Hi Hillaryfaye,

Though I'm diagnosed just recently (couple of months ago), I've been reading and hearing about Danazol quite a bit now and one thing I read and hear everything is that you need to quit taking Danazol while trying to get pregnant and during pregnancy. In some cases, woman stay on it because their attacks are too life-threatening when they stop taking it, but it can be harmful to your unborn child I hear. Weird that your dr. wants you to stay on it then?! Here on the forum, you should ask blessed365 (she's around regularly in the general topics). She started Danazol at a young age I thought and was told it would be hard to ever conceive. But on the upside, looking at the side-effects of Danazol, infertility isn't one of them as far as I know. Hope you will get pregnant soon!
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blessed365
Full Member
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Posts: 175
« Reply #2 on: May 17, 2010, 09:00:25 PM »
Hillaryfaye,

Marielle is correct! I was told by my dr that it would be extremely hard to ever become pregnant due to the fact I just had turned 18 when I started the meds!! But if your dr told you different then listen to YOUR dr. For me like Marielle mention it is WAY to risking for me to come off Danazol, because I have been placed on life support twice already this year due to the HAE!! I hope You have a wonderful baby soon! You know God is able to do anything!!

We don't no what tomorrow holds, but I know who holds tomorrow!!

God Bless and praying for you a healthy child!
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hillaryfaye05
Jr. Member
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Posts: 11
« Reply #3 on: June 01, 2010, 02:03:09 PM »
Thanks for your help! I have been approved for Cinryze but only for when I become pregnant. My doctor is trying to get me approved for Cinryze before pregnancy because its been a year now and havent been able to conceive, so Im hoping I get approved soon, and my fertility will return to normal.. Thanks!
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blessed365
Full Member
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Posts: 175
« Reply #4 on: June 01, 2010, 06:30:17 PM »
So is he taking you off the danazol so you can conceive? I hope everything works out for the best!! God bless!!

Please keep us updated!!!
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laharris
Jr. Member
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Posts: 1
« Reply #5 on: June 08, 2010, 05:05:42 PM »
Ok so this is my first time posting on here... I am 23 and have been diagnosed with  HAE since I was 11. I have been taking Danazol now for a little over a year and my husband and I are thinking of trying to get pregnant. I have a 5 year old daughter and didn't have any problems with HAE while pregnant with her. I am worried now though if I come off the danazol which I know I will have to do in order to get pregnant that I will be bombarded with attacks.My question is can I even get pregnant being that the danazol has stopped my cycle?
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hillaryfaye05
Jr. Member
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Posts: 11
« Reply #6 on: June 22, 2010, 12:26:30 PM »
Danazol stopped my cycle as well... I am taking progesterone to jump start my cycle, and its worked, just not ovulating every cycle.... my OBGYN is planning to put me on Clomid(to cause ovulation) in August if I am not pregnant yet...
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hillaryfaye05
Jr. Member
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Posts: 11
« Reply #7 on: June 22, 2010, 12:28:36 PM »
My doctor is not going to take me off of Danazol until I get insurance approval for Cinryze, in the meantime I am still on Danazol.
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blessed365
Full Member
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Posts: 175
« Reply #8 on: June 24, 2010, 09:48:19 PM »
SO it is safe to say you CANNOT get pregnant on Danazol! Unless they place you on ovulation meds to right!!
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hillaryfaye05
Jr. Member
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Posts: 11
« Reply #9 on: July 02, 2010, 02:34:51 PM »
So Excited to report that I just got approved for Cinryze!
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blessed365
Full Member
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Posts: 175
« Reply #10 on: July 02, 2010, 10:13:11 PM »
Congrats!!! I hope we hear even better news in the near future!!!
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hillaryfaye05
Jr. Member
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Posts: 11
« Reply #11 on: July 06, 2010, 12:18:19 PM »
Thank you! Hope to share good news soon!
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hillaryfaye05
Jr. Member
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Posts: 11
« Reply #12 on: July 16, 2010, 10:56:08 AM »
Had an appointment with my dr. Thursday. He did some research on Danazol and fertiliity (since Ive gone a year and havent been able to conceive) and found out that Danazol is 90% effective as a contraceptive! So for the past year, Ive basically been taking a birth control pill every day! Its no wonder I havent  been able to get pregnant! Thank the Lord for Cinryze!
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blessed365
Full Member
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Posts: 175
« Reply #13 on: July 16, 2010, 01:04:27 PM »
Yes he is correct.. My sister was telling my that, she is studying to be a nurse...

I am sorry I thought you knew that!

Hope the outcome is great!
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