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07/12/2009 09:45 PM

Pregnancy & Porphyria

yourcaitybaby
yourcaitybabyPosts: 3
New Member

Hi all. I was wondering if anyone is this group has any info about how pregnancy and birth affect Porphyria. I am 11 weeks pregnant with my first child, and have definately noticed the porphyria acting up. I've found that one of the biggest triggers of my HCP is hormones and it scares me to think that with such a surge in hormones due to the pregnancy i might be in for some of the most severe attacks i have suffered. I've also been told that pain is a common trigger, leading me to believe that birth itself will trigger an attack. I have so many concerns about this that doctors cannot help with due to their ignoranc on the subject. does anyone have any info or personal experiences that may help?
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08/02/2009 12:12 PM
racheljkeith
racheljkeithPosts: 56
Member

Cait,

I am currently pregnant as well. 26 weeks along. I have one other child, but that pregnancy is what "woke up" the disease in me, I think. So far, I have noticed that I did have quite a few attacks during my first trimester and the beginning of my second. They have settled down over the last 4-6 weeks, though. Luckily, my doctor allowed me to take my pain medication (hydrocodone and tylenol) and my medication for my neuropathy (Neurontin). Unfortunately, the hormone that triggers attacks is progesterone, which is the hormone that surges during pregnancy (estrogen levels actually drop.) I have done a little bit of research on the internet, but much of it doesn't make sense to me because they are medical case studies and I have no medical background. I did, however, tell my OB that he needed to begin researching now. I read some things about how at least one of the drugs that is routinely given during birth can cause grand mal seizures. He assured me that we would be meeting with my anesthesiologist when I was around 33 or 34 weeks, and we would discuss in great detail all possible directions the birth could go in. I will have to have a c-section (since the last one was c-section), which makes me especially nervous since there will HAVE to be drugs involved. I plan on getting a long list of all the possible medicines they could give me, even the most unlikely ones, and bringing them home to look up on the drug database. I am going to ask for more than one meeting with the anesthesiologist so that I can bring the list of okay/bad drugs back to him. I also plan on arming my husband with this same list to bring to the hospital with us.

Since I am a little ways ahead of you in this process, I will try to keep you posted if anything happens with me. I imagine the attacks will get worse again toward the end of the pregnancy because the hormones will surge to prepare for birth, but this is pure speculation on my part. I have asked my aunt about all this as she has AIP, also, but she doesn't remember much from her pregnancy (it was over 35 years ago) other than she would have two to three days of pain and two to three days off, alternating throughout the entire pregnancy. I don't think they could do much for her since back then they knew even less about this disease.

I have found with three different doctors now that they were made aware of Porphyria during medical school, even if they hadn't seen any cases of it yet. So, at least that means that they realize it is there and there is information out there on it. I recommend talking to your OB and telling him/her to start researching now. If he/she is not willing to do the research, you need to find a new OB who is, and you need to find one soon. The pregnancy will fly by faster than you realize.

Good luck, and let me know if you have any other questions. Like I said, I don't have any medical background, but I am going through the same thing as you are right now. If anything, I can offer some commiseration. Smile


09/17/2009 05:47 AM
HoneyBoner
HoneyBonerPosts: 12
New Member

Ok, i can only give my personal input on this subject ,aint its not much considering i've never been pregnant or had kids LOL When i was diagnosed at 12(keep in mind this was 1992..theyve come a long ways), my geneticist personally told me that he HIGHLY recommended not getting pregnant, due to alot of porphyric women either miscarrying, or having to get therapeutic abortions b/c their health was too at risk to continue with pregnancy. I DO NOT WANT TO ALARM, i am just giving my personal story of what info ONE doc gave me years ago. Hormones have been EVERYTHING in my porphyria attacks..my periods is what flared all my attacks to begin with, and the fact birth control being introduced into my system is what kicked my acute attacks, into a chronic battle. I finally had a hysterectomy at 19, so i never had to worry about this part of it... i just remember that geneticist being so stern on not wanting to go down that pregnancy road if at all possible... but of course, my porphyria was in a full blown state then and to a more serious degree, so i have no clue. All i can say is....i've had anesthesia 10s of dozens of times over the years, you have to be VERY VERY careful when using anesthetics with the contraindicated meds with porphyria. I have been given contraindicated anesthetic 3 times in my life, all 3 times i ended up on a ventilator with respritory failure for between 2 days and 9 days. I have ONE anesthesiologist that does all my anesthesia for all my line placements we do, and we have stuck to the same exact regiment for 14yrs now and have had no problems. Most doctors dont know squat about the illness, but anesthesiologists are the one field of specialists that know the most when it comes to the "medicine list". My doc says there's 2 rules to porphyria, If they cant spell it or pronounce it, look the other way and run as fast as u can LOL Love it!! Good luck Smile

09/17/2009 07:49 PM
racheljkeith
racheljkeithPosts: 56
Member

Cait,

Just to ease your mind a little bit, I spoke with Dr. Anderson (the leading specialist on porphyria) a few years ago about getting pregnant and he told me that plenty of porphyric women have healthy pregnancies and that it shouldn't be a concern. The biggest concern would probably be whether or not the baby gets the disease, but the more educated you and the father are on it, the more likely you are to know what's going on if the baby (or more likely, teenager) suddenly pops up with symptoms.

Rachel


09/21/2009 05:48 PM
yourcaitybaby
yourcaitybabyPosts: 3
New Member

Thank you all for your input, I have found it very informative. The great news is, I am now 21 weeks along and have have no troubles at all. as a matter of fact, I've been a lot healthier than many other pregnant women without Porphyria. I have moved hospitals and my new OBGYN is aware of the disease. Sure she doesn't know a lot, but a little bit is more than most others I've seen. I also found out my 1/2 sister who also has Porphyria is now 22 weeks along and she hasn't had many problems at all either. We have both found that eating well and light exercise is a great contributor to the feeling of wellness. I will continue to check in during the next 19 weeks, but hopefully everything stays going as well as it has Smile
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