Imuran & doctors comments

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CheesePuff
Regular Member


Date Joined Oct 2007
Total Posts : 92
   Posted 11/27/2007 8:13 AM (GMT -7)   
I am feeling so frustrated at the moment. I had an appointment with my GI doctor this morning and had a discussion with him regarding my Imuran doze and possible pregnancy.
 
I am hoping to start trying for a baby early next year and after doing some extensive research, I decided to come off the Imuran and stay on Asacol for maintenance. I have been in remission for couple of months now and was on Imuran only for three months.
 
The GI doctor wasn't positive at all and gave me a lecture about coming off the medication on my own (I know he is right...). He told me that it's not safe for me to be without Imuran, as I have severe pancolitis and will flare up as soon as the Imuran is totally out of my system, which takes couple of months.... He told me that he has had multiple of female patients on Imuran while pregnant and all the babies have been healthy.
 
I also asked him about possible side effects on the baby in years to come and he couldn't give me an answer...
 
He even told me that he has been on imuran for 30 years ! I told him that he isn't pregnant or planning to be, so how would he know about my feelings... heh , he didn't like that comment at all. But you understand, how frustrating it is to cope with this illness and all the different side effects....
 
Sorry for the rant, but have to let it out sometimes. I Left the clinic in tears today and feeling that I might have to go back on Imuran and possible delay the family plans...
 
Thanks for listening and if anyone has recently been pregnant while on Imuran, I'd love to hear your stories
 
 
UC since 1995
Total Colitis diagnosed May 2007
100 mg Imuran
3 * 800mg Asacol


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 11/27/2007 9:02 AM (GMT -7)   
I'm a guy, and not on Imuran anymore, but I'm wondering if it would be helpful for you to find a female GI?
James
Current Meds www.myspace.com/gardenerjames

Asacol 4 tabs 2x daily
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
Omega-3 once daily
Tenth Remicade infusion Early December


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 11/27/2007 9:12 AM (GMT -7)   
It's a very personal decision to make (I will probably stay on Imuran during my pregnancy, when that happens b/c I can't take Asacol anymore) so you should find a GI that supports you and yes that was a lame thing to say, he is male and wont be carrying the child so what if he has been on it for 30 years, it was not a good point.

Also, doesn't the Imuran take 3 to 6 mos to work? Is it even the Imuran that is working for you? Maybe it's just the Asacol? Just my thoughts........

Hope everything works out!!
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 11/27/2007 9:12 AM (GMT -7)   
Hey. Sorry for the insensitive GI...that stinks. My GI has always said it was better to stay on Imuran than to go off and risk a flare while preggers (though I am done having babies). If it was me my next step would be to find an OB/gyn that has experience with IBD patients.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-6 a day, Acidopholis Pearls, Prilosec OTC

http://www.healingwell.com/donate
Co-Moderator UC Forum


CheesePuff
Regular Member


Date Joined Oct 2007
Total Posts : 92
   Posted 11/27/2007 9:20 AM (GMT -7)   
Thanks for your replies ! I will definitely see if i can get a second opinion on this.
Beth, I said the same, maybe it's the Asacol which is working, as I was on the Imuran only for couple of months, but he couldn't give me any answers.
I am worried though that I will get a flare-up again and this time even worse than last time. Last flare took a while to clear and am really worried it'll be even worse next time around mad   I will try to make up my mind and maybe go back on Imuran if I will start seeing any of the usual flare symptoms...
UC since 1995
Total Colitis diagnosed May 2007
100 mg Imuran
3 * 800mg Asacol


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 11/27/2007 8:58 PM (GMT -7)   
i am in the same boat. i got off the imuran cuz i want to have a baby next year.

i was only on it for 3 weeks so it didnt do anything for me anyway. so coming off it was no big deal.

my regular doctor said NO WAY to getting preggers on imuran. can cause so many problems its unbelievable. plus what about the fact that maybe 10-20 years from now our child gets some crazy autoimmune disease like ours or worse and its cuz we were on imuran while pregnant.
the fact that they "don't know" is not good enough to go ahead.

and so what if some woman have healthy babies. what about the ones that don't? what about the miscarriages? and all the other problems ones? the chances stated in scientific documents (dr read them to me) say that there is a 4 out of 5 chance to have mutations or birth defects. thats huge.
no way will i take that chance.

i have til the middle of next month to see if im healing and if the mesalazine and pred are working or not. then i have to decide whether or not to go back on imuran and hold off having a baby for a few years. cuz i was told that after a few years i could come off the imuran.
then i hear from others that you have to be on it forever. so all these different stories and answers definitely arent helping my decision making.

i want a baby soon, but i dont want to have one while in this horrible flare. but i am not gonna have one on a class D+ drug thats for sure.

so i dont know what to do really....
steph - 31 year old female - diagnosed UC in 2000
started as proctitis and now is pancolitis..this year long flare is now severe on left side only to splenic flexure. 
50mg prednisone 1x day with breakfast 5 weeks now.. will taper next week by 10mg every 5 days.
2x 500mg mesalazine 2x morning & night - colifoam enima 1x at night - 1/2 endone every 6 hours for pain
now taking calcium supps for pred side effects - got lots of those!
50mg imuran 1x day 8pm to have a baby - VSL#3 didnt work - Aloe Elite didnt work - Budesonide didnt work
ive lost 40+lbs and my legs look like sticks ... ewww
 
 


CheesePuff
Regular Member


Date Joined Oct 2007
Total Posts : 92
   Posted 11/28/2007 1:57 AM (GMT -7)   

Hi

I had a lengthy discussion with my husband last night and he recons it's more important for me to be well than to chance another flare-up. Needless to say, I do agree with him, but not with a risk of having a seriously unhealthy baby. I have decided to stay off the Imuran and once my blood levels are back to normal (I'm anemic too, with Ferritin levels 3) we will start trying.

With any luck I will stay out of the flare until we conceive.  If the lovely bowel flares again, I feel more secure taking stereoids while pregnant than Imuran. I also read somewhere that you cannot breastfeed while on Imuran, so it's a big decision to make.

Best of luck and let me know how you get on :-)

There was an interesting thread on the below website

http://boards.babycenter.com/n/pfx/forum.aspx?tsn=566&nav=messages&webtag=bcus10515&tid=16


UC since 1995
Total Colitis diagnosed May 2007
100 mg Imuran
3 * 800mg Asacol


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 11/28/2007 10:49 AM (GMT -7)   
Jepa - I am pregnant now (27 weeks) but only take Asacol and Rowasa. Thankfully, I have not needed to move into the heavier drugs to maintain my remission, although I did need a short taper of Prednisone for a flare that popped up during my first trimester.

That being said, my GI at the Cleveland Clinic has repeatedly told me that the Clinic has had NUMEROUS 6-mp and Remicade babies, and everyone is doing just fine. I've asked my high-risk OB about it as well (also at Cleveland Clinic), and he stated that he as delivered NUMEROUS 6-mp and Remicade babies himself. All were healthy.

This is obviously a very personal decision and you have to do what is most comfortable for you, but the bottom line is that it is much better for you to be healthy while pregnant instead of being in a flare while pregnant. The flare is really the major risk to the baby.
Current Medications:
- Asacol (4 pills, 2x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)


Harpo
Regular Member


Date Joined Jul 2007
Total Posts : 262
   Posted 11/28/2007 11:50 AM (GMT -7)   
Id stay off the imuran while trying to impregnate.. That doctor sounds like he's in the boat so he doesnt mind you being there as well...

But who am I ? certainly not a doc.
Male 36yrs old. Indeterminate Colitis 6 yrs.


Pro-bio

Protonix
multi vitamin


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/28/2007 5:29 PM (GMT -7)   
i was on immuran while i was pregnant and my son is fine. There is alot of info on immuran but there is alot of conflicting info. Some will tell you it's horrible to stay on it, others tell you it's fine. personally i read lots and lots and lots of stuff, and talked to numerous drs, found a good highrisk OB who had has about 25 years of experince and he told me that even though immuran is listed as a class D drug, that out of all the drugs listed as class D there were really only a few that were so bad he would tell a woman not to take them and risk her disease, whatever it is, getting worse during pregnancy. Immuran is not one of those, hetold me the names i can't remember them though. It is very important that you take LOTS of folic acid, start now, that can help combat the effects of the immuran, Also start a flintstones vitamin, they are just as good as the other ones, just make susre you take the extra folic acid.
this is one of those things, where you get a totally diff opinion by reading a report and by looking at what happens with real babies who were born on this med. perosnally i chose to go with the info given by actual people, rather than what was on a paper.
 
 
snaej ni tfel eht no cip

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