crohns, pregnancy and LDN?

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patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 7/23/2008 9:16 AM (GMT -7)   
I know there are a lot of strands about LDN, but I'm wondering if anyone has taken it while pregnant?

I'm about 12 week along and RAPIDLY spiraling out of control. My D has me home-bound, and I know I'm not nourishing this baby like I should.

I'm having the mental battle with myself of whether or not I would be willing to consider LDN as a possible treatment while I'm pregnant. The only things I take are prenatal vitamins, digestive enzymes and probiotics - no meds.

Any tips or advice?
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 7/23/2008 9:42 AM (GMT -7)   
Well, I know that the LDN website says that it's safe to take in pregnancy and I am pregnant with my 3rd baby while taking all of my meds (I continue them every time I am pregnant). BUT... when I discussed it with my GI he said ABSOLUTELY NOT while you are pregnant. He's been part of a research group for many years and is a veteran GI in my area. I trust his opinion. I don't know of anyone who has taken LDN while pregnant, but maybe someone can post something about it. I was also in a flare early in my pregnancy and desperate for something to help me.

Here's my 2 cents about the meds... Are you opposed to taking medication while pregnant? If so, then I understand why you might want to suffer it out. However, if you're not, I see that you're only on remicade every 16 weeks according to your siggy - apparently that doesn't seem to be holding you. Does your GI have a specific reason for stretching your infusions out so long? Is (s)he willing to bump you up to every 8 weeks to see if that helps? Also, there are A LOT of meds that are fairly safe to take while pregnant. Have you seen a maternal/fetal medicine specialist? Mine pretty much told me that except for a few dangerous meds the philosophy these days is "whatever is good for mom, is good for baby" because a healthy mom does wonders to ensure a healthy baby and good pregnancy outcome. Also, he told me that at this point in the game (about 12 weeks) the baby will take what it needs at your expense, so unless you are losing weight, there isn't a lot to worry about even though the goal is to gain weight. He encouraged me to supplement my diet with breakfast shakes or slimfast or boost - things that people take instead of a meal, he told me to take IN ADDITION to my meals. Are you able to eat at all?

I know there are quite a few people on the boards having great success with LDN, but I would be hesitant to use it in pregnancy only because I don't seem to be able to find too many people who have taken it and have a good outcome to report. Are you willing to look at other meds as an option?

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 7/23/2008 10:19 AM (GMT -7)   
I need to update my signature thingy... didn't even think about it until your response.

Remicade WAS my miracle drug, but I'm pretty sure that our honeymoon together is over. I was back up to Remi every 4 weeks for the months of January, February, March, and April. None of the 4 infusions worked the way they used to. In fact, I couldn't even tell that I had gotten the infusion. I still wouldn't consider those 4 months a "flare", but my bowel movements definitely were not as manageable as they are when the Remi is working its miracle. I blamed a lot of my random symptoms on stress - I got married in APril, and pregnant in May. Yikes, right?

So, around week 8 of the pregnancy, I was actually constipated. I think I've only been constipated like 4 times in my ENTIRE LIFE. It was fabulous. Same amount of cramping, NO running to the bathroom. I knew that was too good to last! about week 9 the D kicked in and has not eased up since. It's actually gotten worse.

I'm not opposed to meds during pregnancy, as long as there is sufficient proof that it's safe. I actually found a website from a fertility clinic that promotes LDN as a means of increasing the chances of conception... so I guess I got prematurely excited, because I can't find much else relating to the topic. One fertility clinic is not enough to sell me on it's safety during pregnancy, for sure.

I have managed to gain 2 pounds so far, so that's something! I am eating and drinking as normally as possible - I'm just home bound because of the D. Worst case scenario, I can handle this for another 7 months if I have to - as long as I can continue to gain weight and my blood work keeps coming back ok. I just don't know how SANE i will be when the baby DOES get here! I'm pretty sure the constant D has given me internal hemmies, but that's really the only tangible side effect that I can articulate. The rest is just the urgency, uncontrollability, and intense spasming that comes with the D. And, of course, the feeling that I'm going CRAZY because I can't leave the house for fear of not being able to find a bathroom in time!

I definitely agree with the "what's good for mom is good for baby" attitude. I just haven't had luck with most typical crohnie meds (pentasa, imuran, steroids, purinethol, etc). My body just doesn't react to them... the Remi is all that has ever helped. Maybe it's time to start researching Humira? So many different directions to research, my head is spinning!

Thanks for your reply, Stef. You're always a good source of info. :-)
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 7/23/2008 1:26 PM (GMT -7)   
Ya know, Maybe it IS time to check out Humira. I swear, I think you're living my life just a few weeks behind me. I'll be 17 weeks pregnant tomorrow and I totally started flaring right around 7 weeks and then at 12 weeks I took my first Humira shots. My GI and I figured out that after 6 &1/2 years of remicade, it just wasn't doing what I needed it to do. I was worried that the Humira might not work either, but in about a week I was feeling like a new person. Now, I have to say that I also got put on 15mg of prednisone (up from my daily 5mg), and that helped too, but, here I am 5 weeks later and things are pretty good. If I were to give a scale of 1-10 I would say I was at a ZERO. And now I would say I'm at a 6 or 7. Not perfect, but eating AND I've gained 3 more pounds. Like you, at 12 weeks I had only gained 2lbs. Now I have gained 3 more in the last 5 weeks. It's really encouraging because I was starting to have that "pregnant guilt". While I waited for my appetite to return I "supplemented" with 2 Carnation instant breakfast shakes a day. I figured it was an easy way to get in 500 more calories (250 each). Anyway.... I know it's frustrating when the usual stuff doesn't seem to work. I'm glad you felt like my reply helped even a little. I definitely don't want to come off like a know-it-all because I don't know anything. I just know it's frustrating to be sick AND pregnant. I hope you get some relief soon. Keep us posted!

mickey138
New Member


Date Joined Jan 2009
Total Posts : 13
   Posted 4/21/2009 11:46 AM (GMT -7)   
After 8 years Remicade stopped working for me too. After reading the black-box warnings for the other TNF-inhibitors, I switched to LDN and my symptoms cleared in two months. I now have less pain than when I was on Remicade AND my arthritis pain is GONE! NO MORE OPIATES FOR PAIN!

ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 4/21/2009 1:43 PM (GMT -7)   
Hi Stef17,

I would love to know why your doc was so adamant about not taking LDN while pregnant. I know that a lot of supplements and medications all have the "If pregnant..." warning, but I've heard that's more of a legal issue than a medical one. From all accounts, LDN is considered safer than aspirin, since aspirin can give you ulcers. But again, I don't know his perspective on it. Did he give any studies or evidence? I'd love to read about it.

ExJohnson
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 4/21/2009 3:20 PM (GMT -7)   
Ex- no, he didn't give me any info as to why. And, I didn't bother to ask, since I knew I was going to go ahead with taking the Humira. He told me I was his first pregnant patient ever on Humira, so I guess taking LDN would have been too big of a risk for him. I agree that most of it is about covering themselves legally. I will be interested to see what studies show as far as LDN and pregnancy are concerned.

Miss3
Regular Member


Date Joined Sep 2008
Total Posts : 97
   Posted 4/21/2009 5:23 PM (GMT -7)   
There are many women on the ldn yahoo group that took ldn while pregnant with no problems.
 
Miss
 
36 yr. old homeschooling mom of 3
Diagnosed Crohn's 06/08, then UC 08/08
Asacol made me worse, reactions to Remicade
Currently taking LDN, feeling pretty good
Probiotic, Omega 3, Digestive enzymes


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 4/22/2009 12:57 AM (GMT -7)   
I do not have Chron's. HOwever, I wanted to tell you that I lost a lot of weight during my first 4 months of pregnancy because I threw up everything I ate. The doctor said it was ok and believe me, I gained that weight and more back during the last 5 months.

My pregnancy was risky since I had to take medications for asthma. These caused the vomiting also.

Take care,

donnaeil
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