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Ulcerative Colitis
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Posted 2/13/2019 10:50 PM (GMT 0)
I have been feeling downright depressed in the last few weeks. I feel terrible most of the time, and it feels like I will be here forever. I am pretty much always in pain a good part of every day, been losing weight, and recently flared back up more than usual. Sort of got the flare under control with Qui Dai. Part of my misery is the steroid taper. I had my infusion today, and I weighed in at what I weighed when I was first diagnosed and was discharged from the hospital, so I know I am not doing so great. My nurse was concerned after talking with me, and told me to book an appointment with my GI. She booked one for me before I left, and was talking to me about switching medications. My GI told me previously that because I am allergic to Humira that remicade would not be as likely to work for me. I know there is Simponi and xeljance. What is it like bridging to those? I am so much better on Entyvio than not, so having a gap makes me very nervous. I refuse to go back up on steroids. They have done enough damage.
Posted 2/13/2019 11:44 PM (GMT 0)
Sorry to hear you're feeling depressed and still dealing with symptoms on Entyvio. I still have mild to severe inflammation in my colon after a year on Entyvio, but am also feeling a lot better than when I first started Entyvio. My GI just recommended I switch to Xeljanz and has no issue with the two drugs overlapping. I had my most recent Entyvio infusion yesterday and am just waiting to try a few other drugs in combination with the Entyvio before I try Xeljanz. I am also waiting for insurance approval to go on Xeljanz and get the necessary shingles vaccination beforehand. Since Xeljanz can bring a relief in symptoms with 2 - 3 weeks, I'm hoping there really isn't a gap that could exacerbate symptoms, but I would double check with your GI.
Posted 2/14/2019 12:12 AM (GMT 0)
Why are you allergic to Humira? Is it serum sickness or allergic to an ingredient? Remicade is based upon a mouse protein and Humira is based upon a human protein.

If it is serum sickness then you have the same chance of being “allergic” to simponi since it is the same anti-tnf mechanism that is targeted.

Are you on 6-mp/Imuran/aza? That is usual the med that you go on prior to a biological. Some GIs keep you on it while on the biological.

You have Xeljanz and Stelara as alternatives if you’re sticking with a biological.

There are steroid enemas.

Also, and this is risky but you could trying antibiotics. Sometimes they cause flares and other times they help put them out.
Posted 2/14/2019 12:35 AM (GMT 0)
I don't know what part of Humira I am allergic to. Is serum sickness the one where they test your blood before you go on biologics in the first place? I remember the GI back in 2017 saying I was good to go on Biologics due to some sort of blood test, but I don't know what it was. Neither of my GI's have ever even mentioned going on 6mps. I was going to ask about adding them, but felt reluctant after reading up on them. I am nervouse about trying the steroid enemas. I tried the suppositories, and had a big uptick in pain. I suppose it might have been coincidence, but I have had a hard time being willing to try again.

Little bear, did you develope antibodies to Entyvio? I recently read that during Entyvio trials that none of the patients that did achieved remission.

I really can't tell what symptoms are due to steroids withdrawal issues and which is colitis. Most of the time (other than the random severe bouts of pain with toileting that wipes me out for a day) my GI symptoms are livable. I will be in trouble, however, if I don't stop wasting away.
Posted 2/14/2019 12:53 AM (GMT 0)
The blood test prior to starting a biological is usually a TB test.
Posted 2/14/2019 3:17 AM (GMT 0)
Do you go to an IBD specialist? How long have you been on prednisone? I personally would probably change doctors, this one isn't aggressive enough. I would definitely be looking at 6mp or imuran. I doubt simponi would be a good option considering your history with humira, but xeljanz could be a good option. Stelara isn't approved for UC, you may need to find a trial to go that route. xeljanz may be your only easy option at the moment.
Posted 2/14/2019 3:52 AM (GMT 0)
My GI hasn't tested for antibodies, so I'm unsure. I asked the nurses about it and they were supposed to inquire with my doctor and get back to me, but that was a week ago and I still haven't heard back.... Little frustrating. I feel like I have to hound them to get answers. I've already tried following up twice.
Posted 2/14/2019 5:11 AM (GMT 0)
I am going to go to the appointment in two weeks and see what he has to say. There is an IBD center 2 hours away that I have wondered about, but that would be incredibly inconvenient. If I was driving that far, I don't know which would be better, Vanderbilt, or the IBD center in Atlanta.
Posted 2/14/2019 4:38 PM (GMT 0)
I'd inquire about adding thiopurines (azathioprine/imuran/6mp), the safety profile is actually pretty similar to biologics. When you suppress the immune system, it is always the same sort of stuff you have to contend with: increased risk of infections, colds/flus/etc. Biologics and thiopurines both have rare (less than 1% odds) of scary side effects, that few ever encounter. The only reason I'd skip the thiopurines is if you have a history of malignancy (skin cancer) as that has shown to reactivate it in those who've already had it.

There's always xeljanz. Stelara too, but you're talking off-label use for UC and a bit more BS to go through to get it approved.
Posted 2/14/2019 6:12 PM (GMT 0)
Thanks. Will be discussing options in two weeks.
Posted 2/15/2019 1:54 AM (GMT 0)
To get stelara you do not have to do a trial there is an alternative. It is already approved by the FDA and on insurance plan formularies. Your GI would have to a script for offlabel usage and there would be a back and forth process with your insurance company. Basically your GI has to say what medications have failed for you, your history and why you need stelara to treat your UC.

It will be up to your insurance to approve to pay for Stelara for UC treatment.

They approved it for me with my pouchitis. Since it was offlable usage I did not have a copay. Now that it is approved for crohns I have a co-pay ($50 but with assistance it is $5 a shot)
Posted 2/15/2019 4:45 AM (GMT 0)
Thank you for the info KS
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