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Ulcerative Colitis
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Posted 9/5/2017 1:29 PM (GMT 0)
Hi All,

I have been following this forum for a long time and need guidance for alternatives/options. I was diagnosed with Pan colitis in 2013 and have already tried and failed the following

List of failed options
1> Pentasa/Asacol/Lialda and Rowas failed in 2013
2> tried SCD,GAPS and elemental diet and failed in 2014
3> Aza and 6 MP failed in 2014
4? tried FMT which seems to help for some time and then stopped working after 10 months. Tried with multiple donors with no effect in 2015
5> Tried LDN in 2015 which helped for few months and then stopped working
6> Tried ISATIS cooling and Qing Dai which also did not work after trying for 15 days each
7>Tried Remicade in 2017 and Remicade did not work even after 4 infusions in 2017
8> Doctors are now pushing for Entyvio
Posted 9/5/2017 2:08 PM (GMT 0)
Surgery? If entyvio fails.

q
Posted 9/5/2017 2:13 PM (GMT 0)
I guess I'd try the Entyvio, but I'd also throw other things at it at the same time. Looks like you've been systematic in what you've tried, so go ahead and take a kitchen sink approach, I think. I'd add a good priobiotic (VSL#3 or homemade yogurt/kefir) and I'd also take tumeric supplements. Life Extension seems like a reputable brand.
Posted 9/5/2017 2:59 PM (GMT 0)
And in addition to the kitchen sink.....I may toss in a few of the utensils like ginger. It has incredibly powerful anti-inflammatory effects (it's a blood thinner so be mindful of that if using a lot). I drink two super strong cups of ginger tea per day made with whole ginger root.

I like the SCD diet, but there is a more progressive diet based upon it (but that also factors in newer science based on the micro biome) called IBD-AID diet. This stands for inflammatory bowel disease anti-inflammatory diet. It includes prebiotics along with the pros.

Diet homepage from U of Mass:

https://www.umassmed.edu/nutrition/ibd/ibdaid/

I am using the homemade milk and water kefir both, but also taking the probiotics in my signature line. I know everyone is different, so forgive me if my suggestions fall short of the type of information you are searching for. I am still kind of new and learning how to reply to people here. Good luck to you.
Posted 9/6/2017 6:27 AM (GMT 0)
Try Entyvio. I spent 4 years failing on other drugs before I tried it and started getting better. I would recommend IBD-AID as well.
Posted 9/7/2017 6:45 PM (GMT 0)
Hi feelinghelplesswithuc,

This has worked for me after I suffered my most vicious flare in April 17.

Click on the link thread below, please read it with an open mind and feel free to research it.

I am not guaranteeing its going to work but its a good start;



https://www.healingwell.com/community/default.aspx?f=38&m=3880183
Posted 9/7/2017 7:57 PM (GMT 0)
I'd say Entyvio, stelara (off-label), xeljanz (off-label), and surgery are all options. You've failed remicade, and it certainly makes sense to try another biologic to see if your second is your solution
Posted 9/7/2017 8:58 PM (GMT 0)
just curious there OP - what does "failed" mean in terms of your symptoms ?

what is your current med regimentalisation and what are your current symptoms ?
Posted 9/8/2017 12:22 AM (GMT 0)
Currently, in a flare and GI has recommended Entvio. Had 3 infusions of Remicade and it did not help at all. There were no antibodies for Remicade developed. The GI felt Humira is similar to Remicade and will not work.

So is recommending ENtyvio. Has Humira worked for anyone for whom Remicade never worked and never got antibodies.
Posted 9/8/2017 5:42 AM (GMT 0)
Did you max out the Remicade dosage before giving up on it? Some people with UC need a *LOT* if Remicade, especially early on, to get their disease under control. This sometimes means frequent dosing at the max dose for the first several doses.

Some GIs are too quick to give up on it and move on to others, when they should really give it more of a chance.

If maximizing Remicade doesn't work, then it's true Humira probably won't either (because you'd likely be what is called a primary non-responder to anti-TNFs), but I'd try to max out Remicade first. If that doesn't do it, go on to Entyvio.
Posted 9/8/2017 2:44 PM (GMT 0)
We tried a double dose of Remicade. In fact, our 1st dose of Remicade everything worked so well. The problem started with 2nd dose and they checked for antibodies and none were developed. They did double dose next time and things got worse.
Posted 9/9/2017 2:57 AM (GMT 0)
After I failed Remicade, my GI prescribed Entyvio. But my insurance insisted I try the lower cost Humira first, before Entyvio. So I did, but Humira did not help much. Entyvio did help.
Posted 9/9/2017 5:35 AM (GMT 0)
I'd definitely give Entyvio a try. However, you may want to get on something like Uceris to try and help you while you wait for Entyvio to take effect (it can take 14 weeks to start working). You can also do steroid rectal meds in the meantime if you haven't tried those yet.
Posted 9/9/2017 11:11 AM (GMT 0)
Can anyone explain why it takes so long for these meds to work? what is going on behind the scenes to require such a lengthy process?
Posted 9/9/2017 7:30 PM (GMT 0)
They don't really take that long to work. Remicade can work miracles in some people after just 1 dose. If you see no effect after 3 doses, the chances of the biologic starting working after that is remote. That said, some people take longer to get into remission than others, for reasons not really known. Maybe their disease is more stubborn or resistant to treatment, maybe they are slower healers, maybe there is lingering IBS or nerve damage to recover from even once the mucosa is healed. Or whatever.
Posted 9/11/2017 6:27 AM (GMT 0)
Well, my two meds are on your fail list and so is Remicade, which I had a couple of infusions of during my year of UC ups and downs and felt pushed me into remission.

Have you tried Prednisone or another steroid? They can sometimes jump start remission while also taking a maintenance med like mesalamine aka Asacol, Lialda, etc.

What about the FODMAP diet? I know it's connected with IBS, but it might help you figure out some trigger foods.

If you haven't had your CBC and vitamin levels checked with labs maybe you should ask your GI about doing some blood work to make sure everything is good in that department.

Here's some alternative medicine ideas as listed on the Mayo Clinic's web site:
Probiotics
Fish Oil
Aloe Vera
Tumeric
Acupuncture
Prebiotics

I would stay away from Flagyl aka metronidazole... i took it for a bit during my year of UC and it ended up causing nerve damage in my feet, which I got corrected via a neurologist who gave me Nerontin.

I'm not sure why Humira wouldn't be considered, but Entyvio is... they are both biologics like Remicade. But I'm not a doctor.

Sometimes you need a cocktail of meds to get you in remission and then you can get to just the maintenance med(s).
Posted 9/12/2017 2:07 AM (GMT 0)
I would go ahead with Entyvio. Seems to be working for me. Just give it a good try, though. They say it can take up to six months. It didn't take that long for me, but I believe the recommendation is to try it for 6 months before giving up. Although I'd guess that if you haven't seen *any* improvement by 6 months, it's probably a no-go.

Giving up on Remicade after only 4 infusions seems kind of quick. I think it can take quite a while, also. You said no antibodies developed, but you don't *want* antibodies to develop with remicade do you? Did you mean something else besides antibodies?
Posted 9/13/2017 1:12 AM (GMT 0)

FlowersGal said...

Giving up on Remicade after only 4 infusions seems kind of quick. I think it can take quite a while, also. You said no antibodies developed, but you don't *want* antibodies to develop with Remicade, do you? Did you mean something else besides antibodies?

My Remicade 1st infusion was a magic. The flare stopped same day and even labs said the same. The problem started on 2nd infusion. The same nite my blood started and I started to have a lot of blood with more than 10 times a day. They did a double dose for 3rd infusion and my number of times increased even further.

They did an antibody test and found it negative. It is strange what worked after 1st infusion became useless in 2nd infusion and with no antibodies.
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