What else to do to stop a mild flare?

It's difficult to live with UC. It is also tough to be a parent of a son with UC. My son was diagnosed in Oct 2016 when he was 14. Failed Remicade rather quickly and was switched to Entyvio. It took him more than a year on Entyvio and balsalazide, mesalamine enemas, VSL#3 to get into remission. Then we had some "good time" in remission, gaining weight and catching up on his height. Overall, 18 months in remission or so.

Few months ago his calprotectin results came out high (around 300) and the doctor switched him back to enemas from supps. There were no visible symptoms. His calprotection improved to 150 a month ago, but at the same time he started to see some diluted reddish spots on toilet paper once a day few days a week. This is where we are: daily enema, balsalazide, Entyvio every 6 weeks, VSL#3 and some vitamins and mild symptoms that sometimes disappear for 4-5 days and then reappear for 1-2 days. My son is 17 now and one day we will probably consider Xelianj or Stellara, but I do not want to rush as although Entyvio does not seem to be too effective, it is less harmful and it is also unnerving to give up on it as there are not too many options available.

Any ideas what we can do to get back into symptom free life?

I can't think of anything else. He's really lucky to have a parent who cares so much though.

To iPoop... thanks... we tried 6 MP 2 years ago. worked very well for his symptoms, but we had to discontinue in few month due to elevated liver indicator (do not remember the name).

Testing hemorrhoid-type of treatment may be a good idea. My son does not feel any pain or discomfort. Can he have a hemorrhoid or fissure and no pain at all?

We did not have a lot of blood, but what you describe may be his case. will ask his GI if she is ok with hemorrhoid treatment. I assume the same treatment can work for fissures as well. Thanks for your ideas, iPoop!

Hi Rocket Man,

Thanks for your questions and input.

We did not test his calprotectin for a year or so. It was 15 and then in a year 300, then in 2 months 150 (the latest one). Strangely, he did not have any visible symptoms while calprotecin was 300, but had some minor ones when 150.

Our doctor dismissed the idea of the hemorrhoid/fissure and she want us to go on Cortenemas for a week or two. I asked about uceris foam, but this is not a standard drug according to my insurance. Nervous about cortenemas as we tried them 2.5 years ago when tapering of prednisone. At that time it did not work much and my son got a moonface for quite some time. Last time we were far away from remission though.

We are doing the Entyvio today, few days earlier than in 6 weeks.

Never heard about Enteragam. Even more expensive than VSL Will do some reading. Thanks.

As for Remicade, it was 3 years ago. First dose early October, last one right before Christmas. The levels we checked, but I do not remember the numbers and dose (pretty high, I bet). At that time the doctor tried to control his UC with just Remicade, nothing else. Worked quite well for few infusions and then stopped. Looking back, I wonder if we were more successful with Remicade if we also attacked UC with some supps/enemas and 5-ASA.

Post Edited (Crazydad) : 12/19/2019 8:33:57 PM (GMT-7)

I think the cortenemas are a good plan. They shouldn't cause moon face.

I had a similar experience with Remicade. I was also on 5-Asa and enemas though and it did not matter.

RocketMan12 said...
Uceris foam might be worth looking into, but I actually meant Uceris tabs (by mouth) earlier. They shouldn't give large steroid side-effects.

Few years ago we tried Uceris when tapering of prednisone. Was not effective enough. Our doctor just recommended us to add Uceris tablets. I am a bit hesitant as do not want to increase steroid exposure, plus I am almost certain his inflammation is not too far of a rectum. Not sure if Uceris will bring any effect needed.

Will study the mastic you mentioned. I am totally open to any supplements/diets/probiotics. Thinking about starting curcumin (have not tried before).

Uceris is definitely less effective than prednisone for most people. Like a squirt gun as opposed to a fire hose. But for a simmering and small flare it may be enough. I've always felt that any new/additional meds added should be commensurate with the severity of the flare, unless you have reason to believe that things are escalating quickly (which thankfully does not sound like the case). So I think that a time like this would be the right time to use Uceris (as opposed to during a bad flare up and expecting a miracle).

No great way of knowing where the little bit of inflammation is without a scope. Doctor could potentially do a short sigmoidoscopy without sedatives or much prep but that's probably overkill. Does he have a history of pancolitis or are things usually confined to the lower portion of the colon? Over time he may learn to roughly sense where the inflammation is by how it feels and how stools are (and of course based on flare history).

Cort enemas are definitely a good idea. Rowasa supposedly has similar rates of achieving remission (without the steroid exposure) but for many, myself included, the steroid ones seem to hit harder and definitely act faster. If they don't move the needle however you may want to revert to Rowasa and add in the Uceris; that duo is probably going to be more effective than anything short of prednisone or a new biologic. I believe that the overall exposure from a normal dose of uceris is almost equivalent to that of a cort-enema, but I could be wrong. They are both quite mild systemically.

Good idea to keep tabs on calpro going forward if insurance allows, at least for the next year or so. Testing every 4 months or so can help to catch mild flares before any clinical symptoms are even noticed. If it comes back normal it is pretty likely that the next few months will be smooth sailing symptom-wise -- and it's always good confirmation that you're on the right track!

Also worth mentioning that if you do decide to try Enteragam, they have a deal if insurance doesn't cover it for $100 for a box of 60 pouches. Not bad... better than VSL and in my experience it works better as well (though comparing them is like apples/oranges as they are in completely different categories).

Please keep me posted as you try these different approaches. Hopefully it all goes well -- will be waiting for good news!

Crazydad said...

Sara14 said...
I think the cortenemas are a good plan. They shouldn't cause moon face.

I had a similar experience with Remicade. I was also on 5-Asa and enemas though and it did not matter.

Thanks, Sara! Is Humira working well for you?

I don't know if it's doing anything yet since I'm still tapering off of prednisone. I went down to 10 mg 3 days ago though and haven't had any symptoms come back yet, so that's a good sign, I think. Thanks for asking. I hope the steroid enemas help your son. They helped me a lot the first time I took them.

Thank you! I will do the same for you and your son.

I take curcumin And Boswellia Serata — both supps were recommended by my doc and I believe that they help. The dose of curcumin that my doc recommended is pretty high — 1.5 grams twice a day.

I really like a brand called “Pure Encapsulations” which you can buy on Amazon.

Hope that helps!

Best,
Lisa

Crazydad,
I was in a rush when I responded on Friday and I wanted to post a few other thoughts about curcumin and supps in case they help you and your son. While I credit Humira for keeping me in remission, I do feel strongly that diet and supps help me. A couple of things to keep in mind:

--The quality of the supplement matters (Pure Encapsulations is a good brand)
--You need a need a high dose of curcumin to see results (my doc recommends 3g which works out to 6 pills a day, I've seen other studies that say 2g a day is enough)
--My doc recommended that I get the curcumin without pepper as he thought the pepper would irritate my gut. A common complaint of curcumin with pepper is that it causes more stomach upset.

I do really think it's helping me, however, I'll be honest in that it's an added expense and an added 6 pills a day which can sometimes feel like a burden. For me, it's worth it. I'm already on weekly Humira and watching my diet very carefully. I'm trying to do everything I can to prevent another flare and consider it part of my toolbox.

Let me know if you have other questions and good luck to you and your son!
Best,
Lisa

Yes, I would agree that the hardest part about it is the "pill burden" as my doc calls it. But I think it's worth it, and certainly worth a try for your son!

I follow a diet that is gluten-free and very low dairy and low sugar. I just got finished baking holiday treats from Danielle Walker's cookbooks (search for "against the grain") I recommend it if you're looking for treats made with honey, maple syrup, etc.

I certainly understand the need the need to calm the anxiety by searching for the next great thing.

Unfortunately I have no experience with Remicade. Originally my doc wanted my on Entyvio but the insurance insisted that I try Humira first. It hasn't all been smooth sailing, but thankfully it's gotten me into remission and I do appreciated the convenience of home injections (takes less than 5 mins, no pain). It took me about 2 months to reach a steady spot where I was able to taper from steroids. I did have to go up to weekly injections to get a good result.