My Immune System Hates Me.

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suchatravesty
Regular Member


Date Joined Dec 2017
Total Posts : 216
   Posted 6/27/2018 9:22 PM (GMT -6)   
I am officially convinced my immune system hates me. Either that, or it is a hardcore machine of intense strength with a terrible sense of humor. Lialda and Budesonide? No match! Prednisone? Ha! It can defeat anything less than 40mg. Humira? I HAVE DEVELOPED ANTIBODIES ONLY AFTER 8 WEEKS. Ohhhh yeah. The labs came back and boom, this is why the Humira stopped working after four weeks. I must say, I am pretty impressed with my body, even if it wants to attack itself.

Next step? Inflectra with a low dose of azathioprine. I noticed not a ton of people are on Inflectra, so I will be sure to report back whether it works. Let's hope it does because I would like the pain to stop.
Left-sided colitis dx on 12/28/17.

Current: 40mg Humira weekly, Saccharomyces Boulardii 2x/day
Wheat-free as of 1/18.
4.8g Lialda (1 month, caused migraines & stopped working)
Budesonide 9mg (3 weeks, did nothing)

FlowersGal
Veteran Member


Date Joined Feb 2017
Total Posts : 501
   Posted 6/27/2018 10:34 PM (GMT -6)   
So sorry! But I do understand. I'm convinced my colon hates me and want to part company with me. Diverticulitis followed by UC and now its throwing mild dysplasia at me.
UC pancolitis DX March 2016, Partial Colectomy for diverticulitis Sept 2014
Apriso .375 g x 4/day, Canasa & Uceris foam as needed
Supplements: Zinc, L-glutamine, Probiotics: Reuteri pearls, VSL #3, Folic Acid, CoQ10, turmeric, boswellia, milk thistle, NAC, reservatol, colostrum, glycine
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 6/28/2018 12:37 AM (GMT -6)   
I just looked it up. Sounds like it is the same drug as Remicade, which a lot of people here are on. I really hope it helps you!
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: "mild-to-moderate" chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. 40 mg pred. Trying to re-quit smoking. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13200
   Posted 6/28/2018 8:06 AM (GMT -6)   
Yeah, inflectra is a biosimilar (the closest thing there is to a generic for biologics) of remicade. Lot's of "does it work as well questions" but nobody ever posts with experience with that med.

Agree totally that our immune systems hate us, I had thought musingly/jokingly before that being one of those talking heads in a jar like in Futurama wouldn't be so bad. But then I realized I could still get eye inflammation or blisters on my forehead or whatever. No winning against this darn immune system...
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Breakfast is a lot less appetizing when you're still nauseous and sore after poops; thanks uc.

3timechamp
Veteran Member


Date Joined Oct 2009
Total Posts : 1022
   Posted 6/28/2018 9:59 AM (GMT -6)   
I choose surgery this year over Humira and Remicade bc of what they do to your immune system.Best decision i ever made

quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 6/28/2018 12:37 PM (GMT -6)   
I suggest you get on another probiotic.....and try rectal meds as well.

Maybe LDN?

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Oxeze/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 50 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

suchatravesty
Regular Member


Date Joined Dec 2017
Total Posts : 216
   Posted 6/28/2018 1:06 PM (GMT -6)   
Quincy -- Which other probiotics do you suggest? Are there rectal meds that would work for someone who is allergic to sulfa and who had a terrible reaction to Lialda?


3timechamp -- I am relatively new to UC and would prefer to try all the various meds first, but am committed to having surgery the moment the medical team's consensus be that it is necessary.
Left-sided colitis dx on 12/28/17.

Current: 40mg Humira weekly, Saccharomyces Boulardii 2x/day
Wheat-free as of 1/18.
4.8g Lialda (1 month, caused migraines & stopped working)
Budesonide 9mg (3 weeks, did nothing)

3timechamp
Veteran Member


Date Joined Oct 2009
Total Posts : 1022
   Posted 6/28/2018 3:20 PM (GMT -6)   
good luck

suchatravesty
Regular Member


Date Joined Dec 2017
Total Posts : 216
   Posted 7/12/2018 4:50 PM (GMT -6)   
Finally starting tomorrow! Nervous and excited all at once. I took the day off in case I have a bad reaction. The IBD Clinical Pharmacist had me to some sort of genotype test to determine whether I could take Imuran, which is why it took so long. Got the all clear today so I will also be starting on 50mg of Imuran tomorrow as well. The pharmacist also made me get my booster vaccinations a little early, as well as vaccinations they usually only have older people or immune compromised people get. The pneumonia vaccination hurt worse than a Humira injection and those suckers sting.
Left-sided colitis dx on 12/28/17.

Current: Inflectra & Imuran (7/18); Saccharomyces Boulardii 2x/day
Wheat-free as of 1/18.
4.8g Lialda (1 month, caused migraines & stopped working)
Budesonide 9mg (3 weeks, did nothing)
40mg Humira weekly for 8 weeks, developed antibodies

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16719
   Posted 7/12/2018 6:00 PM (GMT -6)   
Good luck tomorrow. Hopefully your immune system will like you again soon. smile
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 7/12/2018 7:24 PM (GMT -6)   
Good luck! Let us know.
34 years old; diagnosed UC March 2007.
Latest scope: 9-29-16: "mild-to-moderate" chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. 25 mg pred. Trying to re-quit smoking. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax
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