Prednisone Timeline? Also surgery during pregnancy?

Hi.

So, I'm currently 23 weeks pregnant and in a horrendous flare of my pancolitis.

My CRP is 15 (highest mines ever been and I've been close to surgery twice with past flares) and sed rate is something off the charts as well.

My maintenance meds are Simponi every 4 weeks and 50 mg of 6mp daily.

I've already failed Remicade and have developed an intolerance to mesalamine that was discovered by a dramatic increase in bleeding when using enemas and suppositories a few years back and a systemic lupus like reaction to Lialda shortly after.

Been flaring for about 3 weeks. First step was budesonide with NO improvement after 1.5 weeks. Started prednisone yesterday. I know it's only been 24 hours, but I was wondering if anyone out there also in a significant flare could give me a timeline of symptom improvement when taking pred for a severe flare?? I've taken it before but cannot for the life of me remember how long it took to see results.

And yes, I know prednisone is terrible for you, has horrible side effects, can cause steroid dependency, etc. I've been fortunate in only needing it 3 times over the 8 year course of having the disease and in all situations it was 100% necessary. And I was able to taper without issue in the past so fingers crossed it's that way againZ My dr is super stingy about prednisone.

My doctor is giving me a week to respond to it before admitting me and putting me on IV steroids. Would obviously like to avoid that given current situation in the world, but will do whatever is best for me and the little babe. Does a week sound reasonable?

Also has anyone had or know of anyone who has undergone surgery while pregnant? Unfortunately I'm kind of out of options if the steroids don't work. My body has great timing. Pregnant, global pandemic, UC does shows no mercy.

Input, advice, love, support, all welcome. Struggling hard over here - feeling so sick and like a horrible mama to this poor fetus.

The problem with oral pred during a severe flare is you might not absorb much if things are going right through you. If it's working, you should notice a difference within a few days, for me usually a drop in BM's. Getting into full remission can take 2 to 4 weeks

Sounds like your doctor has a plan to get you through this.

Also I have been using nutrition shakes provides by my nutritionist to make sure I'm getting enough calories. I was having a really hard time eating enough on the low residue diet with the extra calories needed for pregnancy. The added food was destroying me. But now I'm wondering if my semi liquid diet is contributing to my symptoms, such as diarrhea?

Sometimes I have an almost formed bm, although it's usually loosely formed and small little pieces. But then in the next bm there's no formation at all. Could the nutrition shakes be doing this? They're KateFarms brand - Peptide 1.5. I've been mixing them into smoothies with a 1/2 banana, PB, honey, vanilla, and some greek yogurt. They're made for tube feeding so they taste pretty awful plain.

I've tried adding small amount of metamucil and it helped with formation but thought it increased painful gas so cut it back out again.

Don't know what to do.

Thank you.

We talked about the antibody test but didn't do it because of the time it takes to get the results back.

I think the focus now is to get back to remission then we'll play around with the biologics. She mentioned Entyvio and Stelara if my symptoms return when tapering me off of steroids.

She doesn't think switching me to those now will induce remission, though? I guess remicade is the only biologic considered a rescue drug. I think she's also hesitant to give up on Simponi yet because I have such a limited amount of drugs left.

Yes I believe my GI said Xeljanz is not advised during pregnancy.

She said if I've failed Simponi that Humira probably won't work either. There was another in the class she mentioned, too, but can't think of the name.

I would obviously be willing to try but I guess they function so similarly that it's rare for one to work after you fail another?

That's good info! Thank you!

Hopefully the prednisone kicks in and we get the opportunity to try some other drugs. Unfortunately I don't think she'll mess around with trying other drugs while pregnant because it would mean a continuation of this flare.

She mentioned surgery but I have no idea how that would work while pregnant. Unless they would just do something to hold me over (bowel rest?!) until the baby's big enough to do a C section?

Just saying all the prayers and doing all the dances that pred works. I just took my third dose about 2 hours ago. No improvement yet, but hoping it's just taking a little longer because of the intensity of the inflammation.

I had a horrible flare back in 2006 that was so bad that oral pred didn't touch it. I was able to get into remission with I.V. steroids and was switched back to oral as soon as my symptoms started to recede.

As a man, I can't imagine what it would be like to be pregnant, let alone pregnant and flaring.

Poopydoop gave some good advice in regards to biologics. If it takes a while for the Simponi antibody test, then the sooner you get it started the better.

Hi I really hope things get better for you. These times are already very scary in the world and to be pregnant and flaring wow. I have been flaring for 7 months now. I just started prednisone a month ago for the first time in all these years. I was instructed by the doctor in Cleveland Clinic to start at 50mg then 40mg then drop by 5mg/week. Maybe you can try to get on 50mg? The drug is horrible I hate and Ive had the worse side effects but maybe being in your situation not going to the hospital might be safer? Just because of the virus. Try to speak to your GI and see if the 40mg does not kick in a week then you can increase to 50mg?

Okay everyone, after struggling at home for too long they finally hospitalized me. Because of my pregnancy the communication with the GI team is so insanely slow. My GI doc isn't on rounds this week so she wrote out a detailed plan for the fellow and sent it to the OBGYN as well. She called me at noon today to encourage me to get to the hospital ASAP so they could start steroids.

I got here at 3 and they didn't start my steroid until 1 AM! Also they let me run a fever of 103 for about 2 hours before I could get approved to take some darn tylenol.

They finally gave me my solumedrol and told me it was only 20 mg which they said is lower than the dose of prednisone I was taking (40 mg).

They also only did a quick ultrasound and heartbeat check on the baby but haven't connected me to any monitors to keep an eye on things.

When I got the fever, I told them I was getting uterine cramping and they didn't do anything.

I'm really confused.

Not sure what kind of response I'm looking for here - is this slow of care normal? I don't know why I had to rush here to wait almost 12 hours to even start the steroid. And the GI team isn't even seeing me until tomorrow morning.

I'm currently on Simponi but they're planning on switching me to Entyvio at some point

I had a flex sig done this morning and things are apparently worse case scenario. I haven't been able to see any pictures yet - was sedated for the procedure. They told me if I wasn't pregnant they would want to operate without hesitation to remove the colon. They did a bunch of blood cultures to check for outside infection so I think they're worried about perforation, sepsis, etc. Still waiting for all those results.

Since I am pregnant and surgery isn't ideal at this point, they're continuing the IV steroid and starting Entyvio inpatient hopefully tomorrow if everything with the pharmacy goes according to plan.

In the meantime I have met with a whole bunch of different teams of doctors to develop a plan for surgery if I don't respond to the combination of steroids and Entyvio. Plans for me, the baby, possible really early delivering, surgery with baby still in place, etc.

I think I'll be inpatient and closely monitored for any kind of result because ideal surgery timeline if keeping baby in would be before 28 weeks, which only gives us 4 weeks for that decision. But if they decide to take baby early and then do surgery, they're going to try and stretch everything out until closer to 30 weeks, which is 6 weeks away.

So really I think it's still a day by day thing even on the doctors side.

prayers for you=be strong

Hope meds kick in quickly and you feel better and you can keep the baby in as long as possible.