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sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/6/2009 8:35 PM (GMT -6)   
Here's my thing...


I've been on 40 mg of prednisone for two months now. It's helped me a little in the fact that most of my bms are formed. Most of my problems are just during mornings and right before work...which is 2:30pm. I have at least 6 bms a day still. I still have pain...I'm still having urgency and just overall not feeling good.

I have a GI appointment tomorrow for a follow up...she's already had me do bloodwork to be put on Imuran.

I want to get the heck off these steroids, but they aren't helping me at 40mg..and if I taper down a little bit I'm sure it would hurt me right now. I'm not sure if the Lialda is helping me or just not doing anything....

My problem is: I want to start a family. I want to try to get pregnant. None of the stronger meds are supposed to be something you're to be on if you want to get pregnant or if you already are. Imuran or 6-mp. What do you do if you want to get pregnant and the next thing they want to try are things stronger than what you're already on.... not to mention I'm gonna have to be on prednisone LONGER to get adjusted with the Imuran....

I'm so confused. Hypothetically.... Even if I were in remission right now and on Imuran or 6-mp.... and I wanted to get pregnant...they'd suggest getting off those meds right? When you do that...what are you supposed to use as a substitute?
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/6/2009 8:56 PM (GMT -6)   
The 5-ASA's and Prednisone have been used for quite a long time, and are considered safe during pregnancy. Immunosuppressants and biologicals are newer and the jury is still out on them.

I'm sure some of our members will have suggestions for things to try.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/6/2009 8:58 PM (GMT -6)   
i've already done all the 5-asas though...sept for asacol, but it's the same stuff. The thing is i'm not getting the relief i need from those...so that's why they want me to start on the stronger stuff.... so what's strong as that stuff, but safe for pregnancy? it seems like there isn't anything?
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/6/2009 9:29 PM (GMT -6)   
Try to talk to Stef on the Crohns board. She has had 3 pregnancies I think on the big guns including remicade. A lot of the members there have. Also try searching the back posts for them. You will find a lot of support there.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/6/2009 10:42 PM (GMT -6)   
I *think* that Remicade is considered to be safer than 6MP, azathriopine, and other immunesuppreants, but I'm not positive on that. I'm pretty sure pred is a big no-no in the first tri, but that's the part that's also most critical for you to be healthy, also.

I'm sorry that this is such a struggle for you. I hope you are able to come up with a good solution.
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, 40mg 30mg 20mg 15mg 10mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 4/7/2009 6:03 AM (GMT -6)   
Could it be that the Lialda is making things worse for you? There are many people that do worse on the ASA products. A small percent of people get D from it.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
Lialda, 6MP
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16285
   Posted 4/7/2009 6:26 AM (GMT -6)   
I think there are options for you. I have seen a lot of people having babies on meds that I never throught you could safely have a baby on and they have had healthy, normal babies. I don't know much about it because I don't have any children... If I were in your shoes, and I may be some day, I would be wondering the same things. Adoption is always a possibility too. There are a lot of babies without homes. Kids have never been a priority for me, I probably wont have any.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/7/2009 6:52 AM (GMT -6)   
I had bad reactions to sulfasalazine and colazal.... I seemed to do better on the Lialda....ofcourse I was never in remission long...and every time I was on it I was also on prednisone....so I don't really know if it's helped me or just not done anything, I do know it never hurt me.
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 4/7/2009 8:11 AM (GMT -6)   
If I were you I would go ahead and go on the imuran and when you decide to to have a baby you can consider your options then,maybe your GI will let you come off it for the pregnancy,or you may decide to take the frisk and stay on, woman have had sucessfull pregnancies on it .The one thing I can say from personal experience is that I had a terrible pregnancy,because my UC was not under control,and it became much worse,Idon't want to go into details because it was so horrendous,but one thing I did discover,was the doctors consider a UC flare in pregnancy,much more risky than any medications your on.

sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/7/2009 10:29 AM (GMT -6)   
Thanks for your advice Annelise.

Actually just got back from the GI. Doc said she wants me to have another colonoscopy to see if my UC has spread or if it's still just my left side... and to see if maybe it could just be IBS? I dunno, but I'm doing that. She said if it's still my UC then she'll go ahead and put me either on Imuran or Remicade.... I honestly think I'd rather do Remicade because it helps immediately instead of me having to be on prednisone 2 to 3 months more to wait for Imuran to kick in.

My hubby and I also agreed that I need to be healthy first before having a baby. That being in remission or at least out of a flare is more important.
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/7/2009 11:41 AM (GMT -6)   
I'd rather do Remicade, too. My doctor said that if it turns out I can't get off the pred, he'd recommend I skip the immune suppressants and go to Remicade, as new research suggests it's better to be more agressive with treatment.
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, 40mg 30mg 20mg 15mg 10mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


Delarge
Regular Member


Date Joined Mar 2007
Total Posts : 157
   Posted 4/7/2009 2:14 PM (GMT -6)   
Infliximab is generally considered preferable to anti-metabolites (azathioprine, methotrexate) due to its specificity of action. Nevertheless, there are a number of potentially serious adverse reactions (albeit uncommon) associated with biologics. Namely the occurrence of progressive multifocal leukoencephalopathy (resulting from a re-activation of the JC virus) and demyelinating disease of the central nervous system.

AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 4/8/2009 3:45 AM (GMT -6)   
Hi Sweet,another thought,have you discussed with your GI the fact,that you would like to get pregnant as soon as possible,I'm saying this because I'm thinking you could possibly hold off,the big guns for a little longer,if she knew that,she may consider higher dose of pred and a longer taper could be a possibilty for you,I had three courses, of pred, starting at 60mg,infact I was hardly off it for the whole pregnancy,and I also had two doses of IV steriods,as awfull as this was,it did knock the UC down for a bit,and if none of the steriods or pred crosses the placenta during pregnancy,so at least you can take comfort the fact, that it is not affecting baby,I think your GI
might want to re-think,holding off a bit with the remicade in the light of this,and the fact you are not sure how many of your symptoms are IBS,let us now how you go,wishing you all the best Anna
P.S even after having one of the worst UC pregnancies,I'm OK,and baby is now a healthly energetic toddler,so even if things do go a bit pair shaped,we are lucky enough to have decent healthcare,and good monitering.

AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 4/8/2009 7:04 AM (GMT -6)   
Also can I just ask something why do find Remicade a better option than Immuran,I thought it also suppressed the immune system

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/8/2009 8:29 AM (GMT -6)   
Remicade only suppresses one component of the immune system, TNF. The immunosuppressants cause a more general suppression. I guess you could say Remi is more targeted toward a single component which has been found to have a major role in IBD.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/8/2009 9:46 AM (GMT -6)   
Honestly.. I don't want to be on steroids anymore. I HATE them. I've been on 40mg for two months... they're not helping. I am at 200 freaking pounds and I broke down in the office yesterday because I feel like a beast. I have acne that I've never had, hair growing above my lip, my hair is falling out ..just tons of it... my body isnt my body. I'm freakin tired of not wanting to look at myself in the mirror.

Remicade allows me to get help immediately... not wait three months for Imuran to POSSIBLY kick in...and by possibly I mean who knows if I could have a reaction to it.

I've told my Dr. I want to get pregnant....but she said I could always just get off the meds.... plus my husband and I both agreed that I need to get healthy before we try again anyways. It's more important.... if I had a baby now...and couldn't take care of it cuz I was sick... what kind of mother would I be? not the kind I'd want to be.

In my opinion steroids suppress the immune system anyways.. I just don't care at this point... I want to get better. Remicade gets me better. Now I have to get another expensive colonoscopy.. She thinks either it's spread or it could have some IBS with it, but I'm pretty darn sure that I'll still have UC...if it was moderate left sided before...it probably still is... who knows. I don't, but we'll find out.


God listen to me.. I'm so frustrated. Yet another thing... STEROID MOOD SWINGS.
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 

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