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pregancy, LDN and progesterone

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Posted 10/2/2011 11:24 AM (GMT -5)
Can anyone share their experience with LDN and pregnancy? It seems to be debated as to whether or not it is safe. I just found out I'm pregnant (very early) and this is my first. I was only on LDN, but actually was pretty stable before that. I had been on LDN for about a month and a half and got pregnant about a month into that, so I'm not sure how much the LDN has helped (had only reached a 2.75 mg dose). My gyn wants me off it for at least my first trimester.

I found out I have low progesterone and started taking progesterone suppositories, and have seen a slight increase in gas number of BMs, but that also coincided within a couple days of my stopping LDN. So now I'm not sure if this may be Crohn's or the progesterone. I'm just nervous, and having never been pregnant before, I'm not sure what to expect.

If anyone can share experiences with either the LDN and pregnancy or progesterone and pregnancy, I'd love to hear to give me a little peace of mind.

Thanks!
Posted 10/2/2011 12:19 PM (GMT -5)
I don't have any experience to share on LDN and pregnancy, but just wanted to say congratulations!!! Hugs!
Posted 10/2/2011 6:18 PM (GMT -5)
CONGRATULATIONS!!!! I don't know anything about LDN. My GI did not want me on it if I was going to try to have a baby. His opinion was that there wasn't enough info to decide if it was safe or not.

As far as progesterone suppositories - they can definitely increase your symptoms, but it should be temporary. How long do you need to take them? A few weeks?

The beginning of pregnancy can cause what seems like a flare, but it's really just a shift in hormones and your body is trying to adjust. With #1 and #3 I thought I was flaring, but it was my body going "WHOA, these hormones are crazy!" It never got very bad and settled by the end of the first trimester. You are wise to be aware of what your body is doing, but try not to freak out.

Congrats again!
Posted 10/2/2011 6:31 PM (GMT -5)
Hi Nanners- Thank you!

Hi Stef- I need to take the progesterone suppositories I believe through the whole first trimester. I don't feel bad, just an increase in BMs which is concerning to me, but I really appreciate your sharing your experience with me. I'm hoping it's just the hormones doing their job. Did you end up taking any meds at all during pregnancy? Thanks so much for the congrats, my husband and I are beyond excited. I lost my period for almost two years due to Crohn's and was afraid we'd never be able to have kids of our own or have to do fertility treatments. I'm feeling so blessed. Thanks again. :)
Posted 10/2/2011 7:45 PM (GMT -5)
Congrats!

If you're seeing an increase in bms and gas, then cut out dairy and any other foods that normally increase your symptoms. Also, it's might not a good idea to leave the CD untreated, so talk with your GI about getting on something low dose and safe, prednisone, pentasa, etc. You could wait to see if you're one of the lucky ones who goes into remission while pregnant, but that could also be risky.

In addition to my CD meds, I added a probiotic and digestive enzymes while pregnant and stuck to my CD friendly diet, which I found most helpful. I had A LOT of symptoms and CD flare during pregnancy, especially 1st trimester, but my kids turned out all right.

Best wishes!
Posted 10/3/2011 1:09 PM (GMT -5)
Congrats!! Also no clue on LDN here. I agree with Roni, maybe switch to a safer med to help maintain your good health. I took Pentasa the last two pregnancies no issues and am taking it this time too (due in May). The hormones can throw things out of whack without being a flare like Stef said. I was fine the first time, off with my son, and good so far this time. My GI did some blood work to check for inflammation with my son, but things came back fine, so we blamed the issues on the pregnancy.

I haven't done the progesterone either, but I bet that just increases the wacky hormone effects. I know my non-CD friends who were on it felt like they had more pregnancy symptoms.

Anyway, congrats. Hope all symptoms subside when you hit your second tri.
Posted 10/3/2011 2:08 PM (GMT -5)
Hi Roni- Thanks for the input. I'm sorry to hear you flared during your pregnancy. My GI doesn't know yet I'm pregnant since I'm really early, so I'm going to wait it out a bit to see if my symptoms subside. I'm kind of thinking it's the progesterone, but I don't know for sure. I failed biologics and methotrexate, so I'm wondering if something like Pentasa would be effective for me. In any case, if I do get substantially worse, I'll call my GI. I've been on the SCD so I'm strict with my Crohn's foods. I'm hoping that's enough to keep me in remission.

Hi inflamed- Congrats on your pregnancy as well! How far along are you? I'm on a three month blood work routine, so I'll be curious to see what my levels are as far as inflammation. I'll probably make my decision about being on meds then, but I'd really rather not be on any (wouldn't we all).
Posted 10/11/2011 1:55 PM (GMT -5)
I'm not sure if you've had a chance to talk to your doctor about LDN + pregnancy yet, but just wanted to post something I read on-line:

Can LDN be taken during pregnancy? How about while breast feeding?
Dr. Phil Boyle, a specialist in fertility care in Galway, reports the following:

I am confident that LDN is perfectly safe in pregnancy and in certain cases will actually reduce the risk of miscarriage. Thomas W. Hilgers, M.D, of the US, who developed the fertility treatment I provide, has used high dose naltrexone...up to 100mg throughout pregnancy and during breastfeeding safely without ill effect to mother or baby since 1985. I have been prescribing LDN regularly during pregnancy [for several years] and the results have been excellent. Clinical experience has proven to me that it is safe.

We've had over 50 babies whose moms have been on LDN throughout their pregnancies and those babies, if anything, have been even healthier than those whose moms haven't been on [low dose] naltrexone.

From: http://www.lowdosenaltrexone.org/further_q_and_a.htm

I'm also a member of the yahoo LDN forum, and a few women there have used LDN while pregnant and have had healthy babies.  It's scary to use an unknown medication, but probably worse to be actively sick/flaring while pregnant.  I'm hoping to start trying for a baby next year - and am also on LDN, so plan to ask my doctor about this at my next appt.  If you could keep us informed on what you find out - and how you are feeling - that would be great too!    Congratulations!!! 

Posted 10/11/2011 6:52 PM (GMT -5)
Hi CDS1,

Thanks for sharing that link. I had read that, and I heard of some women taking it during pregnancy, but I'm still worried about taking it. I called Skip's pharmacy where I got my script, and they said they also don't recommend taking it, because it hasn't been studied, only at the higher dosage and only on animals. I wish there were more studies.

My Ob/Gyn just didn't want me on LDN at least in the first trimester since it's classified as pregnancy class C based on the higher dose. He'd rather be safe than sorry. However, I was feeling good when he told me to get off it, and now I'm not feeling as good.

How is LDN working for you? Are you also still on Remicade?

I'll keep you guys posted. This is my first pregnancy and with Crohn's I'm very concerned out about how it will all go with my Crohn's. I was in remission when I got pregnant, and my blood work was normal just last month, but I developed an abscess which I think turned into a fistula, and am having more frequent BMs. I see my GI Monday and we'll talk about possible meds if I need them. I was only up to 2.75 mg of LDN and had only been on it for a month and a half, but I think it was helping somewhat. I'm thinking the progesterone supplements I'm on are making things worse, since I felt OK until I started taking those.

I really hope I get back into remission, miraculously I guess, without meds. We'll see. Everyone tells me the first trimester is usually pretty rocky, so we'll see.

Hope
Posted 10/12/2011 9:14 AM (GMT -5)

Hi Hope,

It sounds like the first trimester hormones and (maybe) the progesterone supplements are causing the flare up.  I’m glad you’ll be seeing your GI doc on Monday though and can see what s/he recommends.  I’ve heard lots of positive things about LDN + pregnancy, but it also worries me that there isn’t more scientific data/studies. 

I called my LDN pharmacist as well (Gideon’s Drugs in NYC) and they don’t suggest taking LDN during pregnancy either, though they did state that was mainly because there isn’t enough literature for them to safely recommend it and that I should talk to my doctor for a final opinion.

Do you take LDN in pill form?  Or as a cream?  I wonder if that would make a difference too?  If perhaps the cream form would be a bit safer than the oral meds while pregnant?  Just a thought…

I am still on Remicade.  I’ve also been a fanatic SCDer for almost 9 months.  Remicade + SCD + LDN seems to be the best treatment plan for me right now.  I felt better with Remicade – but my symptoms didn’t actually go away completely until I added in SCD and LDN.  I’d love to be off the Remicade before getting pregnant, but I don’t think that is going to happen.  And I do at least feel safer about that drug since it’s Class B and has been studied more.  (I really wish for a miraculous remission with no drugs too, though!)

It must be hard not to worry or stress about everything , but we all know how much worse that makes this disease!  So try and rest and relax as much as possible and take care of yourself.

I hope you get some good answers on Monday and start feeling better soon!!  

CDS1 / Gia

Posted 10/12/2011 1:20 PM (GMT -5)
Oops, sorry, CDS1, I must not have finished a sentence that I started, leaving that "hope" there. That's actually not my real name, sorry for the confusion!!!

Anyways, I take LDN, well I took LDN in pill form. I don't know about it making a difference between oral or transdermal cream. I'm hoping to not have to get on drugs during the pregnancy, but if it gets to that point, I will. I'm not so much worried about the LDN, since it seems relatively benign to adults, but I just feel safer not taking it since there haven't been studies. If my gyn hadn't have mentioned it, I probably would have just continued taking it.

Good job for you sticking with the SCD! I'm also on SCD and have heard that in combo with LDN it's great. I was originally on Remicade when I first got sick, it helped immensely for the first couple months but then lost its effectiveness very quickly. It seems there have been quite a few women who have been on Remicade while pregnant, so that should be some comfort for you.

Thanks for the well wishes. I'm starting to really try not to stress, since I know it's not good for me or the baby. It can be hard though. I'm hoping everyone is right and it's just the first trimester hormones and everything will resolve after that.

Good luck to you with everything, and I will keep you posted! :)
Posted 9/20/2014 2:51 PM (GMT -5)
Hi all,

I had a flare after a miscarriage in July and can't seem to get out of it. I want to get pregnant again but my doctor recommends waiting for the flare to go away which is seeming to never happen! I just read about LDN but my gastro won't give it to me. Does anyone know of a gastro in the NY tristate area that will give LDN?

Thank you.
Posted 9/22/2014 11:59 AM (GMT -5)
You added this question to an old post. Since your question is not only about LDN and pregnancy, you might want to start a new thread with a title related to LDN only since there may be people on LDN who are not concerned with its pregnancy implications that may not otherwise see this post due to the title.
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