I've agreed to try it after resisting nearly two years. Well aware that those who are doing well rarely are the ones posting, I've been trying to find positive experiences that aren't just from the advertisers. I find some, but mixed in with plenty of the negative experiences that so do not help mindset while entering this new journey.

All other treatments I've tried have had marginal benefit and/or leave me with side effects that sideline me. Makes it hard to believe things could be any different. I do not want to (hopefully) fix pouch issues, only to be once again (as in the past) fighting med side effects like fatigue, sleepiness, body aches, headaches, nausea.....These are the typical ones that hit me and hard. I can handle the side effects if they subside over time. When it's the new norm, it's become more unbearable than pouch symptoms.

I just want to know if it is possible.....and not just a long shot.....to actually feel better all around. Not trade one crappy thing for another.  

 

Original Post

What if you already have antibodies to it because you've been on it before to treat UC? Also will other biologicals work for inflammation in the J-pouch if they haven't worked for colitis?

The reason why I'm asking is because I failed all treatments including the big biologicals. That's why I got the surgery in the first place. Would biologicals ever work again for the J-pouch? I always worry and wonder about this.

Thank you for the replies. 

Insurance declined Humira and it is now being appealed. The denial was because the insurance matrix indicates we haven't tried everything else first that they require. Not sure what it is we haven't tried that they require. I have tried for two years on Cipro, Flagyl and now a low dose of Xifaxan (insurance did not approve the dose the GI wanted to prescribe). The GI says Xifaxan is a mild drug and doesn't think it will do the trick anyway. 

I have not been on anything else. I did propose Immuran, but the GI feels this is an outdated/over used drug that is not as effective. I was also advised that with Immuran, you do not recover from immune suppression like you do from biologics should you need to discontinue them due to cancer; as such, they question whether Immuran is more "safe" than biologics.

I'm struggling with this decision to go with Humira, as is. I was of the mindset all along that I wanted to take this one step up at a time. I was just shown my recent scope images and told that I have some cobblestone inflammation and ulceration with puss. I was also told that the pouch looks older than it should because of these findings, but that it dialates well, no strictures and the pouch body looks good otherwise. Finally, that I should not be thinking about pouch failure based on how things currently look, but that I should consider biologics to heal things. I just felt defeated and resigned/agreed to try biologics now.

The insurance decline and my concerns about biologics have me hesitating once again and wondering if I should consider Immuran. I know some have success with Immuran, but many do not.

Any thoughts would be greatly appreciated.

Andrina posted:

What if you already have antibodies to it because you've been on it before to treat UC? Also will other biologicals work for inflammation in the J-pouch if they haven't worked for colitis?

The reason why I'm asking is because I failed all treatments including the big biologicals. That's why I got the surgery in the first place. Would biologicals ever work again for the J-pouch? I always worry and wonder about this.

I think that is a valid question and with the things we've been through, there is a tendency to always wait for the next shoe to drop. Not all J pouches need treatment and not all need biologics. You have a brand new pouch. At this juncture, it is wondering if you need a medication for a problem you do not have. Sort of like worrying that chemo won't work when you do not have cancer.

I use Imuran along with the biologic Entyvio.  Sometimes it takes more than one medicine combination to give you the best "normal" for you.  I understand your frustration with all the issues you've had to deal with in the past, but remember that each of us is different and Humira might work out just fine.  If it doesn't there are still others to try before thinking about pouch failure.  I did the Humira for a while, but it didn't help me.  Switched to Remicade, which gave me a reaction, and am now on Entyvio.  So far things are going well - much better than before I tried any of these meds. I know it is no guarantee things will work for you, but don't be afraid to try something else to get the relief you need.

With the high cost of biologics, I'm not surprised that the insurance company is stalling paying for the treatment.  Thankfully there a people in the GI office to help fight through all the hoops to get you (and me) approved.  I

Thinking of you while you keep fighting!

Still Standing, thank you.

I just saw the insurance decline letter. It indicates the reason is that none of the other older meds have been tried first....e.g., Imuran, Pentasa, 6MP. I originally wanted to try Imuran before biologics if the antibiotics did not work. The GI said a year or so ago we could do this, but has been recommending biologics all along. I think it comes down to being aggressive with treatment when it comes to a pouch.

I'm really torn now. I don't want to prolong the problems, and I know Imuran is considered a bit outdated, but I think I might wonder "what if" if we don't try it first. I was ready to take the Humira plunge, but the insurance decision has me teetering about it again.

My pouchitis was only controlled on antibiotics and Budesonide-whenever I tried to wean the budesinide pouchitis returned. I never tried immuran or 6MP or biologically because bios didn’t exist and 6MP was brand new and my colon was giving out on max prednisone and I had to have pouch surgery immediately, in 1991.

My GI offered immuran or immuran plus Humira or remicade. I opted for immuran only (plus rotating antibiotics) as a first step because I didn’t want to be hooked on biologics wondering if I truely needed them. Doc recommended the immuran/biologics combo but let me decide.

immiran (plus antibiotics) have worked like a charm for a good 5 years now, and I like that I still have biologics in my back pocket. I definitely need a good nights sleep-my body prefers a full 8 hours, but I figure that’s good for me anyway. I push through some fatigue but Inattribute that more to a busy full time job, kids, you know-busy working mom stuff.

long way of saying Immiran has been my solution for many years now!

Good luck with your decision and your insurance company!

JJA posted:

My pouchitis was only controlled on antibiotics and Budesonide-whenever I tried to wean the budesinide pouchitis returned. I never tried immuran or 6MP or biologically because bios didn’t exist and 6MP was brand new and my colon was giving out on max prednisone and I had to have pouch surgery immediately, in 1991.

My GI offered immuran or immuran plus Humira or remicade. I opted for immuran only (plus rotating antibiotics) as a first step because I didn’t want to be hooked on biologics wondering if I truely needed them. Doc recommended the immuran/biologics combo but let me decide.

immiran (plus antibiotics) have worked like a charm for a good 5 years now, and I like that I still have biologics in my back pocket. I definitely need a good nights sleep-my body prefers a full 8 hours, but I figure that’s good for me anyway. I push through some fatigue but Inattribute that more to a busy full time job, kids, you know-busy working mom stuff.

long way of saying Immiran has been my solution for many years now!

Good luck with your decision and your insurance company!

So glad you have a good response to treatment. It's things like this that make me doubt if I should skip Imuran and go straight to biologics. What did your scopes look like prior to and after Imuran treatment? Did you/do you have ulcers and chronic inflammation? 

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