Do I wait? The 6 month Imuran question...

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jones_77
Regular Member


Date Joined Dec 2005
Total Posts : 77
   Posted 2/11/2009 5:35 PM (GMT -6)   
Hello UCers,

Help! I'm in a real quandry about how long to wait after getting off of Imuran before trying to get pregnant. In early December I went off of Imuran, and I'm just coming home from my final Remicade infusion with the idea that my husband and I would wait to start trying to conceive until April (4 months after Imuran, and 8 weeks from this final infusion). That had been the plan... but my doctor just said it's recommended that you wait 6 months, which would delay us until June. Why does it matter? I've been doing GREAT on Remicade, and I'm afraid that if I wait too long I'll go into a flare again - the LAST thing I want to do before trying to conceive.

So - what do you all think? I know tons of women have done fine giving birth on Imuran, but I also don't want to endanger the baby by trying to get pregnant too early. At the same time, I'm just not sure how long I'll keep this healthy thing up (pause to knock wood!). Any advice? Research? Ideas? I just haven't found a lot of data to support waiting 6 months.

thank you,

Jones

__________
31 y.o. female, left-sided UC, dx'ed 2003
Just had my last Remicade infusion, going to begin Asacol in mid-March
Multi, omega-3s, Zyflamend, Chinese herbs

tiggertenn
Regular Member


Date Joined Jun 2007
Total Posts : 48
   Posted 2/11/2009 9:14 PM (GMT -6)   

How long were you on Imuran?  I took it for a month and couldn't tolerate it.  My doc hasn't said anything about waiting to get pregnant and he knows we are actively trying (without much luck).  I wasn't aware you are supposed to wait...or is it related to how long you were on Imuran?

 

Sorry, I seem to have only asked you questions and didn't answer yours.  I wish I had some advice for you.  It seems like there is a lot of information out there and often I feel like we have to make decisions for ourselves rather than the doctor doing it for us.  I'm going to ask my doctor about this when I see him next week...

 

Tiggertenn


Diagnosed with UC March '07
Colazal 3 pills 3x a day
Prednisone Oct. '08 - Jan. '09
Imuran (It didn't work for me, I wrote it a Dear John letter)
Sulfasalazin 9 pills a day
Folic Acid
Levoyxl
Glumetza


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 2/11/2009 9:30 PM (GMT -6)   
My GI told me that it's not that big of a deal, there isn't that big of a risk. If my husband was out of college right now, I'd be trying to get pregnant, my GI took me off Imuran a month ago.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


jones_77
Regular Member


Date Joined Dec 2005
Total Posts : 77
   Posted 2/11/2009 11:02 PM (GMT -6)   
Thanks so much to you both - tiggertenn, I TOTALLY feel you on listening to ourselves rather than our docs sometimes. With this whole baby thing being new, I'm a little insecure about how to proceed - I'd love to know what your doc says. I did tolerate Imuran (it was actually 6-MP, but they're virtually the same thing) well for about 9 months. For the last 6-8 weeks I was only on 25 mg - a very small dose. That makes me feel a bit better about conceiving sooner than later.

Sweetie31105 keep me posted! I'd like to know there was a pregnant UC buddy out there somewhere....

Side note: are you both familiar with the book Taking Charge of Your Fertility? My doc recommended it for getting clear fertility signs.

Anyone else heard anything about the 6 month rule?

Jones

__________
31 y.o. female, left-sided UC, dx'ed 2003
Just had my last Remicade infusion, going to begin Asacol in mid-March
Multi, omega-3s, Zyflamend, Chinese herbs

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 2/11/2009 11:38 PM (GMT -6)   
I can't comment on Imuran, because I'm brand-new to this whole UC thing and so far am only using Asacol and Rowasa.  Anyway, I just wanted to chime in about Taking Charge of Your Fertility.  It's a FANTASTIC book!  I charted and I thought it was really cool to know that I was ovulating, to know when I ovulated, and to know that we had timed things right in order to get pregnant.  Plus, if it had turned out that we were having problems getting pregnant, the charts would have provided my OBGYN with a lot of useful information. 

Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 2/12/2009 12:53 AM (GMT -6)   
I got told by my pharmacist (his sister also has UC) that after Imuran I was supposed to wait 5 years if I chose to get pregnant (which I never will ever)...*shrugs*
21 yr/old Uni student. Vancouver, BC
Imuran 150 mgs/day

Prednisone 5 mgs/day
Diagnosed UC Sept. 2007
Cal-Mag, CoQ10, L-glutamine. Also now trying probiotics Bio-K (acidophilus)


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 2/12/2009 9:10 AM (GMT -6)   
Good luck, no matter what you decide.

I must agree with Fruitgirl, "Taking Charge of your Fertility" is the BEST book of its kind I have ever read. In fact I think it contains useful information that every woman of child bearing age could use!
UC diagnosed 10/05, first symptoms 1983
6mp * asacol 12/daily * rowasa pm * cortifoam am 
 Culturelle Probiotic - prilosec - metamucil capsules
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh


tooth fairy
Regular Member


Date Joined Jan 2008
Total Posts : 98
   Posted 2/12/2009 9:43 AM (GMT -6)   
I'm pregnant (about 6 wks) and taking imuran, 100mg's. After extensive research (about 2 years) and various consults with high-risk OB's, decided was safest for me to stay on imuran and try for pregnancy. the risk for early miscarriage is higher while on imuran. if you don't miscarry, the baby shows absolutely no higher risks of disease or morbidity (defects, etc).

if you haven't consulted with a high-risk ob-gyn who is familiar with chrons/cholitis patients and pregnancy, you may want to contact them. general OB's really aren't familiar with these pregnancies, and often their advice doesn't reflect the latest research.

tough decision, i am right there with you! my initial conversations w/ my OB and my GI gave me completely contradictory advice; OB said come off all meds then try for preg, is much safer; GI said stay on all meds, is much safer! What's a girl to do?

This girl called her friend at Harvard who happens to be an obstetrician, who then contacted the whole high-risk department there. Harvard's program docs all said to stay on imuran, and accept that you may miscarry. Harvard's program also said that if the preg does not miscarry, I have no greater risk of fetal abnormalities than the general population.

This sentiment was echoed by docs at the Mayo clinic.

I wish you the best of luck with your decision!
Erica, 31
Pancolitis, diagnosed July 2006, at age 29
Imuran, Asacol, Rowasa*(new!)
Experimenting with diet, live culture yogurt and probiotics


jones_77
Regular Member


Date Joined Dec 2005
Total Posts : 77
   Posted 2/12/2009 9:08 PM (GMT -6)   
Erica - congratulations on being pregnant! It sounds like you've really done your homework and found docs that can be supportive. I think I'll hope for the best and see how I'm feeling in April... unless someone can weigh in with a hard & fast wait-6-months-after-imuran-rule, I'm really not finding a lot of info to support that (mythmoon, I would definitely not take the pharmacist's word as final - waiting 5 years sounds pretty extreme...)

I'm grateful for all of you.

Jones

_________
31 y.o. female, left-sided UC, dx'ed 2003
Just had my last Remicade infusion, going to begin Asacol in mid-March
Multi, omega-3s, Zyflamend, Chinese herbs

WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 2/12/2009 11:55 PM (GMT -6)   
I have to agree with Erica...I have met with High Risk OB's at the best hospitals in Boston and they said it is ok to take 6MP and remicade while be preggo. They said they have delivered perfectly healthy babies from mothers who have taken the drugs. In fact remicade is a category B which is as safe as you can get. Not sure if you might consider changing to remi.
ALL doctors agreed and said it was better for the baby for the flare to be under control; healthy mom = healthy baby.

Good luck with your decision. I am right there with you! I just started 6MP and I am about to do my 5th IVF cycle...prob. in May. I want to wait till I am in full remission....

Baby Dust!
severe ulcerative proctitis - march 05 diagnosed
proctosigmoiditis - january 09 diagnosed
hospitalized - 3/08 for 6 days of IV steriods
hospitalized - 1/09 for 5 days of IV steriods / put on 6MP (50 mgs)
past meds: colozol, sulfasalzine, hydrocortisone enemas, canasa, rowasa and prednisone 
current meds: 6MP (50mgs), Asacol 12 pills,  Primal Defense Ultra Probiotic, fish oil, calcium w/ vitamin d 2x a day, prenatal vitamin & extra vitamin c and b12
 


tiggertenn
Regular Member


Date Joined Jun 2007
Total Posts : 48
   Posted 2/13/2009 7:32 AM (GMT -6)   

Jones_77 - Yes, I have read "Taking Charge of Your Fertility" and I frequent the website (message board) that goes along with it. That book has been very helpful to me and so have the boards.  I think it is difficult enough trying to get pregnant with this disease, then we have to stress over the meds we take.  Sometimes it seems like it never ends...

I hope you are able to decide what to do, I see my GI next week and I'm going to talk to him about this.

 

Tiggertenn


Diagnosed with UC March '07
Colazal 3 pills 3x a day
Prednisone Oct. '08 - Jan. '09
Imuran (It didn't work for me, I wrote it a Dear John letter)
Sulfasalazin 9 pills a day
Folic Acid
Levoyxl
Glumetza


LWW1993
Regular Member


Date Joined Oct 2006
Total Posts : 90
   Posted 2/14/2009 6:36 AM (GMT -6)   
I'm in agreement with Toothfairy and Wishful. I'm 34 weeks pregnant and am on 6MP while pregnant. Like you, I thought I would get in remission, go off 6MP and then try to get pregnant, but my GI, high risk OB, and OB all agreed the best thing was to keep me in remission and flare free. When I got pregnant I was feeling better than I had in 2 years and stayed that way all through the first trimester. I have been closely monitored by all doctors throughout the pregnancy and the baby appears to be growing and developing well.

Something to consider is if you do decide to go off the Imuran for 6 months or a period of time before getting pregnant and go into a flare then it will postpone when you can get pregnant. Good luck with your decision and I hope you have a happy and healthy pregnancy in the near future.
Diagnosed UC - 1993
33 year old female, 34 weeks pregnant with second child

Current Meds:
6-MP - 75 Mgs
Colazal (3 pills two times a day)
Folic Acid, Prenatal, Omega 3 Fatty Acid (2 capsules)


tooth fairy
Regular Member


Date Joined Jan 2008
Total Posts : 98
   Posted 2/14/2009 8:09 PM (GMT -6)   
LWW- Congratulations on your pregnancy! I'm glad to hear other people are getting the same advice about pregnancy and all of these medicines. Are you planning on breastfeeding? I have heard that it's a no-no with 6MP and imuran, but wanted to know your plans.

For what it's worth, I had two hcg tests completed this week and the counts are going up like they're supposed to, so even though it's still very early, so far, so good!
Erica, 31
Pancolitis, diagnosed July 2006, at age 29
Imuran, Asacol, Rowasa*(new!)
Experimenting with diet, live culture yogurt and probiotics


LWW1993
Regular Member


Date Joined Oct 2006
Total Posts : 90
   Posted 2/14/2009 9:35 PM (GMT -6)   
Toothfairy - That's great news about your hcg levels. How are you feeling during the first trimester? I'm not kidding when I say I felt better than I ever have in over 2 years during the beginning of my pregnancy. For once I truly felt healthy. I hope the same happens for you.

about breastfeeding. That is my biggest decision right now. I breastfed my first daughter for 9 months and it was wonderful. For the first eight weeks I was on no medication for her. Then my flare started which is what has changed my life ever since. Pretty much from 8 weeks on I was on varying doses of prednisone, as high as 60 mgs and Asacol for a period of time. After many consultations with her pediatrician and lactation specialists it was determined that she was getting very little of the medicine through the breast milk and I could continue to breastfeed if I felt up to it. I did continue, but also started supplementing with formula to give my body a little break until the flare got under control.

Now, with the 6MP it seems that everything you read online says you shouldn't breastfeed. My GI specializes in just IBD and has said that he knows of patients who decide to breastfeed while on 6MP and those who go off of it about 1 week prior to delivery. He won't tell me exactly what to do, but he has indicated that if I were to flare postpartum then it's harder to get it under control and to care for my baby. Which is exactly what happened last time and I was miserable and could not care for my daughter and actually ended up hospitalized for the first time ever having UC in over 14 years at the time. (I had a different GI last time).

I recently talked to a lactation consultant who helped me last time and she said according to Dr. Hale's (breastfeeding expert) latest edition of Medication in Mother's Milk that the mothers who were on 6MP and breastfeed showed that minimal amounts of the drug made it into the breastmilk. That the peak amount was 2 hours after taking the medication. And that the babies who were tested to see if it was actually in their blood had nothing of significance. He goes onto to say that if you've taken it all through the pregnancy that a fetus has more exposure to the drug during pregnancy than through breastmilk. That is the first time I had heard that. It had always confused me why something would be okay during pregnancy and not for breastfeeding. But as my GI and lactation specialist said, that during pregnancy sometimes you don't have any other options. You HAVE to take something to keep the mother healthy in order to carry a pregnancy to term. Whereas, since there are other options for breastfeeding, no one is going to say it's safe or okay to take certain drugs while breastfeeding. Plus, NO drug company would ever nor could ever test on pregnant or breastfeeding woman. But that's not to say there haven't been people out there who have done it. There are just no formal studies.

So to answer your question in a very long way, I am seriously considering breastfeeding while on 6MP. I still intend to talk to my pediatrician and some other lactation specialist, but from what I've found recently it doesn't appear to be as harmful as I once thought.
Diagnosed UC - 1993
33 year old female, 34 weeks pregnant with second child

Current Meds:
6-MP - 75 Mgs
Colazal (3 pills two times a day)
Folic Acid, Prenatal, Omega 3 Fatty Acid (2 capsules)


tooth fairy
Regular Member


Date Joined Jan 2008
Total Posts : 98
   Posted 2/15/2009 7:21 PM (GMT -6)   
LLW,

UC-wise, I am feeling pretty good so far. (all of 2 weeks since my positive pregnancy test though! We have awhile to go yet...) Pregnancy-wise, I feel fatigued, vaguely nauseated, and my chest is SORE! I'm actually very grateful for the symptoms, as crazy as that seems...they are reassuring.

I didn't know I had UC until 3 days after my second son (my last pregnancy) was born. I actually had my first-ever flare throughout that pregnancy. At around 12 weeks, I had mucous, but no other symptoms. The OB on call said it was "stress." (??) At 18 weeks I had some blood to go with the mucous, but bowel habits were still regular, 1-2 times per day, solid. My OB thought it was hemrhoids and gave me topical cream to use. At 32 weeks I thought I had food poisoning--I will spare the details, but I couldn't go more than 20 minutes (day and night) without needing the toilet. It took 3 weeks of failed treatments before my new GI threw up his hands and scheduled me for a scope. The prep put me into labor--our son arrived healthy, just small, at 35 weeks. My symptoms didn't improve with delivery, so I had a colonoscopy when he was 3 days old that finally gave me the UC diagnosis.

So, I don't really know how my body will respond to pregnancy this time around--I had my first fare while preg. before, but I wasn't medicated. I'm hopeful that since I'm in a good remission with only minor blips here and there, that I can continue with this happy trend for the next 7 months.

--I am so encouraged by what you say about breastfeeding!! I stopped nursing my second son at 4 months when I started the imuran. We had just started him on some solids, so I felt a little less guilty; he at least got 4 exclusive months of breast milk. I would LOVE to do at least that much with this baby. I think I will contact our lactation consultant and pediatrician as well.

What you say about breastfeeding makes a lot of sense, and I hadn't heard that before, thank you. I agree--it seems like the info out there is very incomplete. Keep us posted on your decisions!! (yikes, my boys are starting to crash...time to stop playing on the computer and get them ready for bed!) -Erica
Erica, 31
Pancolitis, diagnosed July 2006, at age 29
Imuran, Asacol, Rowasa*(new!)
Experimenting with diet, live culture yogurt and probiotics


LWW1993
Regular Member


Date Joined Oct 2006
Total Posts : 90
   Posted 2/15/2009 11:39 PM (GMT -6)   
Erica - I know what you mean about feeling the pregnancy symptoms in the first trimester. As lousy as they make you feel it is reassuring. With my first daughter I was miserable in the first trimester. This pregnancy, nothing. Not a single symptom. It was great, because I felt so good, but I didn't believe I was pregnant until I finally saw the baby and heard the heartbeat at 7 weeks. Hopefully the symptoms will ease up for you soon.

That's good to know about your scope putting you into labor. My GI had suggested if I was still flaring of the possibility of doing an unsedated sigmoidoscopy to see how bad the rectum was inflamed to help decide if I should have c-section vs. vaginal birth. I'm hoping we don't have to do it. My flare is manageable and last time I did tear, but only a 2 and supposedly you don't tear as bad the second time. So I'm hoping to avoid the sigmoidoscopy and a c-section if possible.

I would love to know if there are others on here who breastfed while on 6MP. When you do a search, I think I've only seen one other person say they have breastfed while on 6MP/Imuran. I wish it was easier to find information on the subject instead of just one sentence on whatever site you go to saying not to do it. I would love some explanation to why or why not it's not recommended.
Diagnosed UC - 1993
33 year old female, 34 weeks pregnant with second child

Current Meds:
6-MP - 75 Mgs
Colazal (3 pills two times a day)
Folic Acid, Prenatal, Omega 3 Fatty Acid (2 capsules)


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/16/2009 10:36 AM (GMT -6)   
Jones - are you stopping your meds because you want to get pregnant?  Is that what your doctor said you had to do or is it something that you decided to do because you were nervous about the meds and pregnancy?  My doctor has always told me that the most important thing for a UCer is to be in a stable remission when conceiving.  The risks to the fetus are much worse - in his opinion - if the mother is flaring than if she is some of these meds.  So for the waiting 6 months after imuran - I don't see why you should have to if many GI's say it is perfectly healthy to be on while pregnant.  Ultimately it will come down to how comfortable you are with the idea of a pregnancy with these meds running through your system.
 
Good luck whatever you decide!
Mamas Boys (aka KTM)
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid
Status: Remission!!

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