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Advice needed...can't get off rectal steroids

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Posted 8/3/2017 1:16 PM (GMT 0)
Hi guys. Been a while. I need some advice and input from the forum...

Long story short...flared for almost 2 years after my last baby. 10mg/kg every 6 wks and 50mg of 6mp finally got me unto remission. From last September to this February. In February we attempted to drop my remicade back to 5mg/6wks because my levels were in the 30s and I was having bad side effects. Unfortunately since then I have break through inflammation...not a full on flare.

I did a couple short rounds of prednisone...then upped remicade back to 10 mg (my third double dose infusion will be next Friday). I was able to stop the pred but have been on/off cort enemas since February. Every time I try and taper...almost get off them..blood comes back. Blood and cramping are the only symptoms I am having. No pain when going, no urgency, only going once a day (knock on all forests of wood).

Well I was surprised in June when my husband and I found out I was pregnant. I thought I would slide into remission like I did with my other pregnancies but I'm not so lucky this time.

GI moved me to Uceris foam and it holds me but one night off and blood and cramps are back. I am getting a flex sig next Tuesday and will discuss options. I do not want to be on rectal steroids forever.

This rollercoaster has been going on for sooooo long. I am pushing for surgery after the baby comes early next year.

Do you guys have any input for me?? Any advice on how to get off the rectal steroids??

Also a side note I haven't been able to use Rowasa since my last pregnancy sad And from previous scopes I'm dealing with a 2 inch patch at my rectum/sigmoid juncture. Not sure if this is still the case. And don't think it's hemmorhoids...I'm never that lucky.
Posted 8/3/2017 5:26 PM (GMT 0)
Going off doesnt sound like a good idea considering you're pregnant. Congrats!

I think you should have a scope on a day with no rectals for a day or two and see where the blood is coming from.

I would think that hormonal changes have a hand in it at this point.

q
Posted 8/3/2017 5:49 PM (GMT 0)
Thanks Quincy. I appreciate your input. I cant go off unless I'm stable. My last pregnancy landed me in the hospital. Since then I've been super vigilant about symptoms. Rectals immediately. I just wish rowasa would work. Being on steroid rectals can't be good long term can it?? And they still cause me "steroid" issues albeit mild but my system is sensitive to them.

I'm just so confused as to why it keeps coming back. I did a stool test (fecal lactoferrin) and the normal range was 0-7. I was less than 1. And usually with inflammation this test is a good indicator for me. I even took a sample that was after no rectals for almost a week when the blood came back.

I'm getting scoped on Tuesday. I plan on not doing an enema Sunday and Monday so nothing's being masked.

My only thought is to possibly up my 6mp. Try 75 mg one day and 50 the next. See if my body handles it and if it helps this last spot heal.

This is just so brutal. I'm happy to be pregnant but it happened unexpectedly. So now I'm trying to taper klonopin and quickly as possible (was on it because of the steroids over the past 2 years) and I'm having withdrawal symptoms. I just thought I'd catch a break and heal when I found out I was pregnant. Tears. Sniffle.
Posted 8/3/2017 7:28 PM (GMT 0)
It's a fine line, but you need to do most important initially and go from there. I cant advise on any of the immuno meds because I have no experience.....definitely a good idea to see if upping it will be OK.

Good you're having the scope ...hopefully, it will give a proper visual as to location and bleeding.

I've never has fecal lactoferrin test done as any indicator for flaring.

Have you had that patch area biopsied?

I agree with the brutal part....I imagine your worring is all over the place considering your past experiences.

Please let us know how the scope goes. Maybe make a separate thread with a more specific 6 MP, Remi question, etc. Hopefully more with experience will answer.

hugs,
q
Posted 8/3/2017 8:23 PM (GMT 0)
Welcome back TotesMagotes! Exciting on the new baby on the way but sorry your UC is acting up again...

I'd explore raising the 6MP, provided your blood test results are supportive of that (normal numbers on Hepatic Function Panel test and also the Complete Bloodcell Count test). Have you had the Thiropurine Metabolites blood test, to see how well you are metabolizing the 6MP? It's very helpful in dosing, and you might not currently be within the ideal therapeutic (healing range) and if so that test would say and be good evidence for a dosage increase. Only downside is any changes to your 6MP dosage will not be felt for at a minimum of 6-8 weeks time, as that med is so darn slow-acting. You'd be waiting a long while...

I don't see any 5ASA/Mesalamines in your meds list, and I would consider adding them back in to combat any mild inflammation you have lingering. I know you said you had issues with the Rowasa (remind me what those were again?), but I'm hoping that wouldn't extend to the oral tablets at least. It's all about cumulative effect, and they do still have an impact when added to everything else. Despite all the meds I am on, going to twice daily rowasa from once seemed to nip a blip in the bud and help a lot! Took my bms from 5-6 with blood down to 1-3. Rather swift improvement within a week for something I initially assumed to be rather dire... So don't discredit the humble mesalamines even when on powerful biologics!
Posted 8/3/2017 9:24 PM (GMT 0)
@quincy - yes I did have that area biopsied back in january 2016 when I had my last colonoscopy. From the report it came back as active UC. I've wanted my GI to biopsy again and check for pathogens. Maybe he can do that when we flex. I am pretty worried. Usually pregnancy puts me in remission and I flare 3rd trimester. This time I'm praying I don't flare the whole time. My meds are holding me at a decent level. My issues are the random blood and cramping. But I haven't been off steroid enemas long enough to see where it could really go and now is not the time to test that for sure.

@iPoop - thanks for the welcome back smile I have not not had the Thiopurine test done. My blood counts have been all normal since starting 6 mp a year ago. I tried 75 mg of 6 mp when I was first diagnosed but it sent my liver crazy. That's why my thoughts are the 75/50 alteration to start. But I will ask my GI about the test to check its therapeutic range. My CRP has even been low...not a good indicator for me. I actually just had more blood work this morning.

You're right on the waiting and to be honest I'm nervous to change anything at this point because I want to see if my body will go into remission once I settle out of the first trimester. I'm 9 weeks...so about a month...and maybe some positive changes.

I haven't taken Lialda since I started Remicade so over 2 years. That may be a good idea to bring it back in. I miss Rowasa if you can believe that. When I was using it during the flare with my last pregnancy it made things worse. Increased frequency and cramping. I haven't tried it in at least 2 years though. Meds work different when my body is pregnant. It's bizarre.

What are your thoughts on long term use of steroid enemas?? Right now I am on the Uceris foam. It keeps me stable but I prefer the cort enemas...right now my anxiety is thru the roof from weaning klonopin so my GI switched me to the foam in hopes of less side effects. I have just been on them so long. I had a break when I was in remission but for the better part of 2 years I have been on some form of rectal steroid. I want off of them and the steroids out of my system. Maybe I should try Rowasa again.

It's so disheartening to be on these heavy hitting drugs and still having issues. These ideas are great though so thank you. I will bring them all with me when I see my GI Tuesday. I'm really curious to see what is going on in there.

It makes me insane to think I may never get off the steroid enemas.
Posted 8/4/2017 12:10 AM (GMT 0)
Steroids of any form, including rectal-route, shouldn't be used long term. You still get side effects and the bowel walls can thin due to it.
Posted 8/4/2017 1:03 AM (GMT 0)
Hi TotesMagotes,

Congratulations on the pregnancy. I had asked the same question back in May and you had provided me with your experience. Thanks for that. I only read that post today.

My flare stated at 9 weeks and the doctor recommended prednisone but I asked for cortenema. He said if they didn't work within 2 weeks we had to think about bilogics. Fortunately they worked quickly. I had used cortenema one day and the budesonide foam enema next day. I felt the cortenma didn't do much because they reach beyond rectum and doesn't do much to the rectum. But budesonide foam enema worked well because my inflammation mainly at the rectum. I stopped both at 12 weeks. But my doctor suggested to take them through out the pregnancy if they worked for me.

I've started to see blood again since yesterday after doing well for 8 weeks. I will start the enemas again fingers crossed to work quickly as last time. I suggest you to try budesonide enema and see. I don't think its good idea to taper the cortenema now and increasing 6mp. I think steroids are safer in pregnancy than 6mp. Steroids are given to mothers who are experiencing pre-term labour to accelerate the development of lungs.
Posted 8/4/2017 11:36 AM (GMT 0)
@iPoop I feel the same way. My gi doesn't for some reason. I need to discuss. Some things will have to stay as is right now because of the pregnancy. I have to be healthy so the baby can be healthy. I just hate being on them long term. And to be honest I would rather take the enemas right now than oral pred.

@sweety5 thanks for the reminder. I remember posting that. Doing whatever to get/keep yourself healthy. I will stay on them. And you're right they are safer than 6 mp. Hopefully something gives atsome point and will deal post partum to get off them. Also hopefully the scope gives us some insight. Thank you so much.
Posted 8/4/2017 12:13 PM (GMT 0)
Congratulations! Fingers crossed your body remembers that early pg is a good time to heal, I hope things turn around quickly for you. I don't have any advice on the med plan, but hopefully the flex wig will shed some light on what is happening. Hope you can get off the steroids soon.
Posted 8/4/2017 12:18 PM (GMT 0)
All I gotta say is your children ought to treat you like an honest to goodness queen, with all you go through to have them! Same to all of you other UC moms out there smile
Posted 8/4/2017 1:02 PM (GMT 0)
Thanks so much guys. Your support is invaluable.

This will be my last baby. Tubes tied twice ;)

Here's to some healing during the pregnancy!!!!!!! Please dear universe. Lol.
Posted 8/5/2017 11:24 AM (GMT 0)
I needed to elaborate on a comment I made in this post about 6mp and steroids. For people on monotherapy there is no increased risk of 6 mp on an pregnant mother and her fetus based on findings in the most recent studies of the PIANO registry.

Dr. Uma Mahadevan started the registry and is a leading expert in ibd and pregnancy. Based on her findings in the past 2 years (the studies I've researched) a pregnant woman on a biologic or immunomodulator has no increased risk of defects, low birth weight or precterm labor than a woman not on medication. A woman with ibd in general has a small increased risk of low birth weight and pre term labor. However a woman on combination therapy of a biologic and immunomodulator has a SLIGHT increased risk of low birth weight (on top of a woman with ibd). Also there is an increased risk the baby may have more infections at 9-12 months. The latter is still being researched because each year the findings see an increase then don't. They are following babies in the registry until age 4.

So I wanted to clarify. For me personally being on combo therapy increasing 6 mp isn't as safe as steroids. But women should know research is showing our meds to be safe. And this includes breastfeeding which shows the meds only getting in at a nanogram level with no impact on the baby.
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