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Pregnancy flare, Rowasa vs Prednisone

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Ulcerative Colitis
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Posted 6/4/2010 6:06 PM (GMT 0)
I'm 6.5 weeks pregnant, flaring for the past 2 weeks quite badly (I was well controlled when I got pregnant - the best I had been in 2 years, and now this).

I haven't been eating much at all, having lots of bloody diarrhea, especially in the morning. I've lost 6+ pounds in the past 2 weeks and have been pretty miserable.

Right now I'm taking Lialda 4 pills (4.8g) per day and one Rowasa enema at night. I saw my GI doctor this morning and he told me to try taking the Rowasa twice a day over the weekend and if that doesn't help or if I get worse to start taking prednisone, which he gave me a prescription for (starting at 40mg). I've never been on prednisone before, and am rather concerned about starting it because I have a history of not being able to successfully taper off drugs. So while I'm not opposed to going on it for a few weeks, I am opposed to being on it permanently. My doctor is also hesitant to start me on prednisone, which I respect because doctors can often be quick to just throw any medication at you that might help (though that's certainly not always the case).

Is it normal to be prescribed Rowasa enemas twice a day? I know my insurance won't cover it because one time the prescription got messed up at the pharmacy and they tried to submit it for twice a day when it was only prescribed for once a day and they said the insurance rejected it. I could do it twice a day for the short term but on the long term it's going to get expensive.

I'm also concerned about the higher dosage of mesalamine - we seem to be getting outside of the normal range of the dosage (I had thought I was already on the "max" dosage for both drugs). Normally I wouldn't be so concerned for myself but I am worried about the effect on my pregnancy. My doctor seems to feel most of the mesalamine isn't absorbed from the enema, that it is mostly topical.

I feel like going on Rowasa twice a day would just be delaying the inevitable, my intuition doesn't feel like it is the answer. Part of me wonders if I am reacting to it or the Lialda or both. I tend to be the worst at night/early morning and tend to get gradually better during the day (I take all my meds at night). I did read a post on another forum where a woman said she started reacting to Lialda negatively when she got pregnant and it cleared up when she went off of it. I'm scared to try going off for fear that I will get any worse.

So I'm looking for input on any part of my situation, but especially regarding the Rowasa enemas twice a day, whether I should even bother trying that or just go straight to the prednisone (which I have been dreading). cry cry cry
Posted 6/4/2010 6:15 PM (GMT 0)
I was on Lialda and prednisone during my pregnancy. I have never done Rowasa.

My son is healthy - in fact he was born a little early but his lungs were totally developed. Apparently, prednisone is what's given to moms who are in danger of delivering pre-term. It did him no harm whatsoever.

That being said, I'm sure you know about all the joyous side effects of Prednisone. Don't stay on it a minute longer than you have to. I've been on it since November of last year and I can't get off it.
Posted 6/4/2010 6:40 PM (GMT 0)
Erinkate, that is my concern too, not getting off of it once I start. I can live with the side effects on the short term but do not want to be dealing with them on the long term.

I'm trying not to be too concerned about the effect of the drugs on the fetus at this point. I know a lot of people have taken these drugs without problems (and I'm so happy that you have a healthy son!), and I know that me being healthy is one of the best things I can do for the pregnancy and the baby.

Lialda and Rowasa were working wonderfully for me before I got pregnant, I was feeling so great which is why we chose to conceive at that time. We had been waiting for a year and a half for my colitis to be under good control before conceiving, as per the advice of my GI.
Posted 6/4/2010 6:47 PM (GMT 0)
You can also try Hydrocortisone enemas or foam before you try oral prednisone. They only treat where the Rowasa would but if your doctor thinks there's a chance more Rowasa would help there might be a chance these would help you, too.
Posted 6/5/2010 12:19 AM (GMT 0)
Ugh Just Ugh (I know how you feel :p), thanks for the input. Hopefully I can stay away from the prednisone. I have another appointment with my doctor in 10 days and will discuss this option with him then.
Posted 6/9/2010 11:15 PM (GMT 0)
Well I delayed as long as possible, which ended up with me in the ER yesterday morning getting fluids. I started taking the prednisone yesterday and I was impressed by how quickly it began to work. I'm still having diarrhea, but it's not all blood and it's more like 4-6 times a day instead of 10-15 times a day. I can actually eat now, before every time I ate it came out as diarrhea in about an hour :(

I woke up from my nap today thinking that any drug that works this well must come with an awful price (side effects). Hopefully this treatment will be mostly uneventful and by the time I am finished (8 weeks) I will be in the 2nd trimester and things will have calmed down a bit.
Posted 6/10/2010 2:44 AM (GMT 0)
Did you consult with your OB/GYN about the 8 weeks of pred? I am also pregnant and my best advice is to talk to both your GI and OB. Being in the hospital and being that sick is certainly not good for the baby so I am glad you are feeling better and the pred is helping!
Posted 6/10/2010 1:20 PM (GMT 0)
I haven't actually seen my OB yet - my first appointment is on Tuesday (I'll be 8 weeks by then). Both my GI doc and the ER doc felt that prednisone was safe (I was really reluctant to take it), and that there was more risk to the baby from my disease than the drug at that point (I even had the ER doc double check it for me and he said it was a class B drug, the same as the Lialda and Rowasa I'm already taking).

I'm really a better safe than sorry person, to the point of not wanting any unnecessary ultrasounds, avoiding canned foods because of BPA, eating organic as much as possible, etc. I hate that I need the drugs but not taking them doesn't seem to be much of an option :(
Posted 6/10/2010 2:13 PM (GMT 0)
Prednisone is safe for pregnancy and is a much better option than being so sick.
I understand you "hate needing drugs" but please be considerate that that is all that is keeping most of us on this forum on this green earth. You have been fortunate to not need prednisone earlier.
Good luck.
Posted 6/11/2010 1:48 AM (GMT 0)
Don't get me wrong, my intention was not to be inconsiderate. I appreciate that these drugs are available, but I am concerned with the great number of side effects some of them come with.

I much prefer to find more natural methods of controlling illnesses, but I know that is not always an option. I am suspicious that the drugs are simply a bandaid and causing my disease to worsen over time - the more drugs I take the worse my flares eventually become, requiring more drugs, etc. Now who is to say that this would not just be the natural progression of things? But I lived with relatively mild symptoms for 6-8 months before being diagnosed (and even longer than that when I think back to how long I was showing strings of mucus in my stool without realizing what it was - several years). It seems like once I started taking the drugs things went downhill relatively quickly, even if the increasing amounts of drugs were controlling my symptoms periodically. Does that make sense?

I'm just horribly frustrated with the relatively quick progression this disease has taken in the 2 years since I've been diagnosed. I'm still young (30) and fear where my disease will be in another 10, 20, or even 40 years if I am lucky enough to make it that far ;)
Posted 6/11/2010 3:37 AM (GMT 0)
The 5ASAs are very safe and don't really get absorbed into the bloodstream.

Pred I'd be worried about, just cause I don't know what it will do to the fetus. Maybe try entocort or cortisone enemas first? These don't end up in the bloodstream so much.
Posted 6/11/2010 3:47 AM (GMT 0)
Malkavian,

I agree, and I wasn't so concerned about the mesalamine drugs at the recommended dosages but I was a bit concerned when I was taking 2 Rowasa's a day in addition to the 4.8 g/day of Lialda (kind of outside the normal realm of experience). Prednisone seems a bit scary to me. From what the ER doctor told me, in animal studies there were risks associated with cleft palate during the first trimester, but it hasn't been seen in women taking the drug. (I'm thinking that like many animal studies, the doses were probably much higher than normally used in humans). I felt like I was at a place where I wasn't going to get any better without the prednisone and the more I flared the more I risked losing the pregnancy.

Thank you. I will definitely look into the possibility of the cortisone enemas in the future. IIRC, I think entocort isn't considered as safe during pregnancy as prednisone (but don't quote me on that)
Posted 6/11/2010 5:01 PM (GMT 0)
Weevil,

I am almost 29 weeks pregnant and have been on 3 to 4 Lialda a day since about 8 weeks, I started daily Rowasa enemas at about 18 weeks...although I am not consistent with them as I should be - I have a four year old and work full time so it is hard for me to be as consistent with the nightly enemas...  So, like you I am at a fairly high level of mesalamine drugs while pregnant however my baby boy is doing great and my UC has been kept at a minor flare...

Posted 6/11/2010 7:12 PM (GMT 0)
thatfield, I am so glad to hear that your UC isn't giving you too much trouble :)

I'm trying to be very optimistic that I will get this under control and be able to go back to living my life. Basically right now I am housebound due to the frequent diarrhea, with urges that come on suddenly - I do well to make it to the bathroom in time just in the apartment - I wouldn't make it if I were out and about. The prednisone is not working as well as I would have liked - the first 24-36 hours I saw a lot of improvement and I was feeling much better but since then I've been going downhill a bit. I'm trying to just give it time to work but I am getting a bit anxious (I can't even sleep for more than 2-3 hours without getting up to run to the bathroom). I know it takes longer to start working for some people - and I hope I am one of those rather than one who it doesn't work at all for.
Posted 7/14/2010 2:51 AM (GMT 0)
have you tried using Entocort? For me, it works just as well as Prednisone but without any side effects. It's a time-release, so it's absorbed directly in the intestines.

I'm 18 weeks pregnant and on Rowasa once nightly--and miserable. My doctor wants me to wait as long as possible before I turn to steroids but between the burning pain, weight loss and 18+ trips to the bathroom each day, I don't know how much longer I should wait.
--
Rebecca
Originally Diagnosed: 7/94 Moderate left-sided UC
Current Flare started: 05/10/10
Posted 7/14/2010 1:15 PM (GMT 0)
I , like u, was in a nice remission (1 1/2 yrs) when i ttc my second child. I flared pretty much right away.

I was taking 6mp and suppositories. I saw my OB first (and u should make all efforts to see urs ASAP). Your OB needs to know what is going on. I understand that you are worried about any unnessary testing, radiation, meds, u/s ect, but these things are nessary to ensure a healthy pregnancy.

I was already considered high risk after delivering my first child 2mo premature (at the very begining of my first ever UC flare), tho, the flare may not have been the cause. My OB and my GI worked very closely together, by phone, and i saw each doc every other week, so i saw someone every week of my pregnancy.

While there is some debate here (as i have seen on other posts) about UC patients seeing a high risk pregnancy doctor (perinatologist), that is just something i would recommend. They would be very well versed in UC in pregnant mom's, along w/ all the meds u might need to take.

I started 40mg pred very early in my preg. I did have to have extra ultrasounds to be sure the baby was growing properly, and i was indeed told that there is a risk of cleft lip/palete, which of course can be corrected beautifully these days. I tapered off the pred in a few months, but flared right away agian, so it was back on 40mg, then tapered to 10mg and remained on 10mg the rest of the pregnancy. I went into labor at 25wks (and as another poster mentioned) was was given two doses of steroids (not pred) to help mature the babys lungs. I made it to 28wks and went into labor again, getting to two steroid doses again. Then delivered at 34wks. (what a wonderful miracle!!!)
We are still unsure if the actual UC was the cause of my preterm births as i do have other maternal illnesses, but i wanted to share with u that it is much more important for you to be healthy, and have a healthy, then the mild risks these meds might cause. Just keep ur chin up and get to your OB right away, they need to know what's going on, and ask if u should see a perinatologist. Good luck!!!
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