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Posted 8/12/2018 6:00 PM (GMT 0)
Some of you may know I've been out of remission since about mid-April and trying to figure out what's going on since my Humira levels are good. I just wanted to give you an update on where I'm at now.

My doctor ordered a calprotectin test. The result was 256. That at least proved that something is indeed going on, but it didn't freak me out too much because I've read on here that people who are flaring can be in the thousands.

I wasn't supposed to have to get scoped again until 2021. We are going to go ahead and do a colonoscopy on August 28th. Yay. Oh, and apparently they discontinued the prep I know and love, Prepopik. Now I have to do a new one called Clenpiq. Cranberry flavored, so...salty and bitter, awesome! I'm nervous about my ability to drink the stuff and if I'll get side effects that I didn't get with my familiar prep.

I think the Humira is at least keeping me from deteriorating as badly as I normally would have without it. I go about 5-6 times a day. The odd thing is that I don't really have diarrhea. I still have semi-solid stool, just with blood and mucus. Not a ton of it, but enough to be a problem.

The doctor has been mentioning either adding Imuran or switching to Entyvio. I really don't want to mess with Imuran. We'll see what ends up happening. But that's where I'm at for now.
Posted 8/13/2018 3:17 AM (GMT 0)
Hi Glogirl, when I was on Humira, my GI ordered a trough test to ensure the biweekly dose was enough, it wasn't, so she had me do another starter pack and then go on it weekly. That did me for awhile but when I had a colonoscopy I still had inflammation at the end of my rectum, so then we threw Tacrolimus suppositories at it, in addition to the weekly Humira. Then, I had a flex sig, still had that stubborn inflammation, so buh bye Humira and Tacrolimus and hello Entyvio and Rowasa enemas. My calprotectin numbers were about the same yours at the time.

I dunno, maybe biweekly Humira isn't enough, don't blame you for not wanting to mess around with Imuran. Perhaps Rowasa in addition to Humira you're on now? For me, the Entyvio has been a better drug for my UC than Humira, last calprotectin numbers well under 50.

For the prep, no advice there, it's all awful. I got the Golightly stuff, a powder in a jug you mix with water. With that, I mixed the lemon lime crystal light mix, so I could choke it down. I nearly threw it up every batch I drank.

Good luck on your colonoscopy.
Posted 8/13/2018 1:30 PM (GMT 0)
There's seldom 1-medication that works 100% for us. Combination-therapy (taking multiple medication at once) is often the best approach for us, and that might just give your Humira a boost and regain your remission.

1.) You can re-add the mesalamines: take 4.8 grams oral mesalamine and a nightly 4.0 gram rowasa enema.

2.) You can add Imuran/Azathioprine or 6MP.

3.) You can do steps 1 and 2 combined.

Humira seems to be working some, I'd add to it rather than switch.

What worries you about Imuran? It's a good addition to your Humira, and has a very similar safety-profile.
Posted 8/13/2018 5:24 PM (GMT 0)

Verucasalt2.0 said...
Hi Glogirl, when I was on Humira, my GI ordered a trough test to ensure the biweekly dose was enough, it wasn't, so she had me do another starter pack and then go on it weekly. That did me for awhile but when I had a colonoscopy I still had inflammation at the end of my rectum, so then we threw Tacrolimus suppositories at it, in addition to the weekly Humira. Then, I had a flex sig, still had that stubborn inflammation, so buh bye Humira and Tacrolimus and hello Entyvio and Rowasa enemas. My calprotectin numbers were about the same yours at the time.

I dunno, maybe biweekly Humira isn't enough, don't blame you for not wanting to mess around with Imuran. Perhaps Rowasa in addition to Humira you're on now? For me, the Entyvio has been a better drug for my UC than Humira, last calprotectin numbers well under 50.

For the prep, no advice there, it's all awful. I got the Golightly stuff, a powder in a jug you mix with water. With that, I mixed the lemon lime crystal light mix, so I could choke it down. I nearly threw it up every batch I drank.

Good luck on your colonoscopy.

Thank you for the input. I believe I did that same test and the results showed that my Humira levels are good and I haven't developed antibodies.

Suppositories would be good if I can do that, rather than enemas. I am curious though if Rowasa would help me.

Blech, I've never had Golightly but it sounds far from pleasant.
Posted 8/13/2018 5:30 PM (GMT 0)

iPoop said...
There's seldom 1-medication that works 100% for us. Combination-therapy (taking multiple medication at once) is often the best approach for us, and that might just give your Humira a boost and regain your remission.

1.) You can re-add the mesalamines: take 4.8 grams oral mesalamine and a nightly 4.0 gram rowasa enema.

2.) You can add Imuran/Azathioprine or 6MP.

3.) You can do steps 1 and 2 combined.

Humira seems to be working some, I'd add to it rather than switch.

What worries you about Imuran? It's a good addition to your Humira, and has a very similar safety-profile.

Yep, it might be time for combination therapy for me.

I think every time we've added oral mesalamine it didn't do anything, but the enema might help. Although it would be very difficult if it had to be done daily.

We might have talked about this a little while ago, but my main worry with Imuran is the possibility of nausea. I think you helped me see that it's not as likely as I think (unless I'm getting you mixed up with someone else). That did reassure me some, but it's still scary. I can't handle even a minute of mild nausea.
Posted 8/15/2018 2:49 AM (GMT 0)
Hey again GloGirl.

I dunno, depends on where your inflammation is but a lot of us UC peeps have that stubborn bit at the end of the rectum, which is why the enemas are prescribed. You can inquire about Tacrolimus suppositories but I had to get them compounded at a pharmacy and my insurance did not cover it. It was 75 bucks a month. They worked some but not for long term. I'm not gonna lie, hate the friggen enemas with the fire of a 1000 suns, such a hassle and all around yuck but they work. With all the advances with biologics and we gotta use enemas like it's 1950.

I never got nauseous on Imuran and I'm sensitive to that side effect of drugs. I had to stop taking it because I got pancreatitis from it. I take methotrexate for my other autoimmunes and that did make me nauseous as hell. I do it by injection now. It all depends on your doctor, my last one had me swimming in Humira. I did a 2nd starter pack and then weekly injections. She wanted to do a 3rd starter pack but my insurance said no. Maybe your doc will toss you on Entyvio, which wouldn't be so bad.

You can try and push your doc for weekly Humira, Imuran or the Rowasa but unfortunately, they wield the power with the prescriptions. He/She will evaluate after your colonoscopy and then decide about medications. My money is on you leaving that colonoscopy with an enema scrip. Yippee!
Posted 8/15/2018 10:02 PM (GMT 0)

Verucasalt2.0 said...
Hey again GloGirl.

I dunno, depends on where your inflammation is but a lot of us UC peeps have that stubborn bit at the end of the rectum, which is why the enemas are prescribed. You can inquire about Tacrolimus suppositories but I had to get them compounded at a pharmacy and my insurance did not cover it. It was 75 bucks a month. They worked some but not for long term. I'm not gonna lie, hate the friggen enemas with the fire of a 1000 suns, such a hassle and all around yuck but they work. With all the advances with biologics and we gotta use enemas like it's 1950.

I never got nauseous on Imuran and I'm sensitive to that side effect of drugs. I had to stop taking it because I got pancreatitis from it. I take methotrexate for my other autoimmunes and that did make me nauseous as hell. I do it by injection now. It all depends on your doctor, my last one had me swimming in Humira. I did a 2nd starter pack and then weekly injections. She wanted to do a 3rd starter pack but my insurance said no. Maybe your doc will toss you on Entyvio, which wouldn't be so bad.

You can try and push your doc for weekly Humira, Imuran or the Rowasa but unfortunately, they wield the power with the prescriptions. He/She will evaluate after your colonoscopy and then decide about medications. My money is on you leaving that colonoscopy with an enema scrip. Yippee!

I'm glad you at least agree that the enemas suck; I see how they're so many people's go-to that I forget it doesn't mean they think they're a breeze!

That's good that you didn't get nauseous even though you're prone to it. Pancreatitis, though, yikes. Yeah, I wouldn't be too upset if he put me on Entyvio. I haven't look into it in depth though.

Haha oddly enough, my doctor has never prescribed enemas. So I don't think he will, but if I ask him I don't think he'd give me a hard time.
Posted 8/16/2018 8:31 AM (GMT 0)
I've bounced around insurance plans and initial doctor I had never prescribed the enemas either, he also did not seem to think it necessary for any diagnostics like colonoscopies or flex sigs. The doc I had at next insurance, she threw everything but the kitchen sink up my butt and scoped me six ways to Sunday and while I was impressed as hell, I really wasn't any better off. The Entyvio plus the enemas seem to keep things pretty good, not perfect but better than Humira. I'm back with 1st doctor I had, but while I was away from him, I got street and gangster with my UC with the doc that prescribed everything under the sun, so current doc, much less passive about treating me. He's pretty nice though, even though he gave me some bs about Kaiser ( my insurance) not having xeljanz, even though they do. I heard that's the drug to be on If yo colon is flame'n. I dunno though, when I asked what he would put me on if Entyvio failed, he mentioned Stelara. Whaaa? That's not xeljanz.

Ya, the enemas suck, last thing you want to deal with when you just want to go to sleep. At least the Tacrolimus supps were easy, one up your bum and done, nighty night time. They burned though, so I guess every med has a downside.

I feel for ya, cuz now you gotta be in limbo until your colonoscopy. I know some like to run for the pred but not me. Nope, nope,nope, not unless I'm really bad off, not getting on the pred dependency train. If you weathered the Humira OK, Entyvio will be a breeze. I got slightly itchy after 1st dose, nothing a Benadryl couldn't fix and kind of dehydrated, so drink lots of water before and after...and take a Benadryl before, I forgot to. Of course, everyone is different but that was my experience.

Well, enough late night rambling, hang tight till your scope.
Posted 8/17/2018 12:00 PM (GMT 0)

Verucasalt2.0 said...
I've bounced around insurance plans and initial doctor I had never prescribed the enemas either, he also did not seem to think it necessary for any diagnostics like colonoscopies or flex sigs. The doc I had at next insurance, she threw everything but the kitchen sink up my butt and scoped me six ways to Sunday and while I was impressed as hell, I really wasn't any better off. The Entyvio plus the enemas seem to keep things pretty good, not perfect but better than Humira. I'm back with 1st doctor I had, but while I was away from him, I got street and gangster with my UC with the doc that prescribed everything under the sun, so current doc, much less passive about treating me. He's pretty nice though, even though he gave me some bs about Kaiser ( my insurance) not having xeljanz, even though they do. I heard that's the drug to be on If yo colon is flame'n. I dunno though, when I asked what he would put me on if Entyvio failed, he mentioned Stelara. Whaaa? That's not xeljanz.

Ya, the enemas suck, last thing you want to deal with when you just want to go to sleep. At least the Tacrolimus supps were easy, one up your bum and done, nighty night time. They burned though, so I guess every med has a downside.

I feel for ya, cuz now you gotta be in limbo until your colonoscopy. I know some like to run for the pred but not me. Nope, nope,nope, not unless I'm really bad off, not getting on the pred dependency train. If you weathered the Humira OK, Entyvio will be a breeze. I got slightly itchy after 1st dose, nothing a Benadryl couldn't fix and kind of dehydrated, so drink lots of water before and after...and take a Benadryl before, I forgot to. Of course, everyone is different but that was my experience.

Well, enough late night rambling, hang tight till your scope.

You're awesome-I like your sense of humor about things and of course how you've taken the time to tell me your story.

I had never heard of Tacrolimus supps until you mentioned them. Hopefully the burning goes away quickly. Yeah, the worst part of the enemas for me was knowing that if the urge to go came up, I'd have to try to quell it instead of just relieving myself. That sucked.

I agree about the pred, I would very much like to avoid it at all costs unless I'm in dire straits.

Thank you, I am hanging in there for now. We'll see what happens.
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