New Here..Need Advice!

Hello! New to posting - been reading the forum and would love others opinion on my condition.

Diagnosed in 2009 with Moderate UC (left side - rectum) shortly after having my 1st baby - after a 3 1/2 Month flare I went into remission with 4 Lialada's a day and Rosawa Enemnas. I went 2 2/12 years with out any problems - completely normal (yay!). I then got pregnant with my 2nd baby and at 35 weeks i started having symptoms and they put me on 40mg steroids along with 9 Balsalazide a day. The steriods helped the inflammation and i was able to get off of them after 4 weeks. Then shortly after giving birth my flare started up with a vengeance (10-12 bm a day, little blood in stool and joint pain) and they put me back on 40mG steroids and canasa suppositories. Almost 5 Months later I'm still on 40MG (uhhhhh, i know it's awful) and my Doc switched me back on Lialda (4 pills a day). After a Colonoscopy early this month it still showed active inflammation and the Doctor recommended Humira. however, for the past 1 1/2 months i have been feeling amazing. 1-2 almost formed BM and no other symptoms. :)

After that appointment, I went to a new Dr. bc I wasn't a fan of being on steroids for so long after learning about steroid dependency and I'm not a fan of biologics (they scare me). The new Doctor also recommended BioLogics but recommended Entyvio. My "gut" is telling me to get off predinsone and see how my body reacts with just take my Lialada and see if I can go into remission that way before getting on anytype of Biologic. I guess what I want to know is...am I crazy?

The Dr. wasn't totally against it (probably b/c I told him it was what i wanted to try) but did tell me that my last colonscopy showed active inflammation when on steroids so that i'm most likely going to have that without steriods and maybe even worse.

I just feel like if i don't try the route of getting off steroids i'll never know if it would have worked and then i'll be stuck on biologics forever! I've only had 2 flares since 2009 and both were involved with my pregnancies....and no more babies for me in the future.

What are your thoughts?

Also, I would like to try other things besides medicines. Any diet recommendations? Probiotics? Holistic?

Thanks for the read!

Allison
4 Lialda a day
20MG Predisone (currently)
Enemnas (not consistenly)

Post Edited (ACB782) : 1/22/2016 7:39:49 AM (GMT-7)

"My "gut" is telling me to get off predinsone and see how my body reacts with just take my Lialada and see if I can go into remission that way before getting on anytype of Biologic. I guess what I want to know is...am I crazy? "

no - just add the enemas to the mix - consistently !

You can taper of of the pred. inflammation may increase some, unless the lialda controls things enough.

You report few symptoms, so maybe you carry a bit of inflammation before you get too many symptoms. This is good and bad. Good for you not to be bothered with symptoms. Bad because you might ignore inflammation that could develop into colon cancer.

You may not understand steroid dependency. You do not become dependent because you take them a long time, you are called dependent when you need them for a long time. There is no addiction physiology going on here.

You could try Uceris instead of pred. It is easier on the body, but for some works just as well (or better) in the colon. It helps me a lot.

Did you go off all meds when in long remissions? You should stay on a lower maintenance dose forever. Each time you start the meds again, the chances of them working are lower.

You can try an immune suppressant like 6mp (or Aza). These are intended to let patients stop using steroids. For some biologics, like Remicade, you should always do it with an immune suppressant anyway so you do not reject the Remicade. Entyevo does not require an immune suppressant because it is not a TNF blocker.

Most people do have to take some therapy, usually a med, for life. Some can switch to anti-inflammatory foods and supplements once they are in remission. There are some people who only flare when pregnant or just after delivery. When their hormones go back to usual levels, they settle into remission. But, I do not know a lot about that.

Starting a biologic does not mean having to take it forever. While there is some risk of losing effect if you stop and start, some people take the biologic until they have been in remission for a year or more, and then drop down to Lialda or some other maintenance med. Also, "forever" is a long time, and within a decade there will be new biologics, and new drugs, and microbe therapies (likely based on what is learned from FMT), and possibly even stem cell treatments. So, not taking a biologic that might spare you form cancer, or from a nasty flare, because of "forever" is not the best way to frame the issue.

good luck

I agree that you definitely need to off the pred.

But you did have a multiyear remission with Lialda supplemented with Rowasa until you became pregnant again. Since you seem sure “no more babies for me in the future” why not go back to Lialda, and, as Juststud said, back to nightly Rowasa enemas. Rowasa is one of the most effective meds and one with the fewest side effects.

You could at least give it a chance before climbing up to stronger meds with more side effects.