Xeljanz, Stelara or Surgery

UCinsouthfl said...

I haven't tried xeljanz or stelara but my GI's (I have 2. One normal GI and then 1 super specialist) are telling me that the chances of either medication working is highly unlikely.

I don't know why they tell you that when xeljanz in particular is renowned for working in patients who did not respond to anything else (sorry i don't know much about stelara to comment on that)

I "failed" mesalazines, prednisone, budesonide, imuran/azathioprine, infliximab and entyvio but xeljanz put me in remission.

If you've had enough of trying different drugs then it's perfectly reasonable to go for surgery at this stage. But for me i decided i wanted to be confident i had tried everything before going down that path.

Thank you both... I am definitely leaning in the direction of trying the meds first...

most of the GI always try to push towards to the surgery...
But you have to manage your way..

Stellara is less effective to uc than the cd patients...it is true.

So frustrated... just got word back that my insurance (blue cross/blue shield) company denied xeljanz right now. I believe they said I have to try Stelara first... what is the point of having a doctor if they can't treat me??

Straydog-My insurance company won't approve 10mg per kilogram of remicade because my trough levels are high.

Thanks Keith. I met with a really good surgeon with a ton of experience from the University of Miami. I'm meeting another from The Cleveland Clinic in another couple weeks, just to be sure.

Definitely more and more feeling like I want to try stelara and xeljanz first though...

Keith-I already met with one of the surgeons and I feel confident with him as my surgeon, but I want to hear from this other well renown doc from The Cleveland Clinic too..

My doc appealed once already and she's considered a specialist guru GI doc. She's written and peer reviewed a bunch of research on IBD.

I believe the insurance company said I had to try stelara first. Honestly, I wanted to try stelara anyway, so I guess its not terrible. My GI just thinks there's a very low chance stelara would work. She feels I'd have a better chance with xeljanz.

Thanks Straydog. I actually picked a plan with BCBS anticipating getting surgery possibly this year. Out of pocket max is low. I think its just BCBS. My plan is super expensive

I went ahead and scheduled the surgery initially, but looks like I'll be postponing for a little while. I was anticipating starting xeljanz first, and I know xeljanz works quick if its going to work.

My husband has been on Xeljanz for almost six years now and the insurance company still denies it every year and we appeal and it gets resolved. If you want to try the Xeljanz, your doctor needs to appeal. Most recently, insurance disapproved it twice because prescription was for 20 mg (which is typical for induction of remission for UC) while Xeljanz is only approved at 10 mg for rheumatoid arthritis. We have had it approved on BC/BS and Aetna

Many know my husband's story. He had tried and failed at Remicade, humira and Entyvio. The only thing that worked was prednisone.

He was literally 10 days away from surgery when we got the Xeljanz approved. At that time Xeljanz wasn't approved yet for UC, so the prescription was off label. Surgeon discouraged it. Surgeons love to operate! Husband started on the Xeljanz and within days he could tell that it was having a positive impact. We are now at 5 or 6 years full remission.

Sounds like your doc may not have a lot of experience with Xeljanz. Keep pushing if you want to give it a try.

Good luck with this.

CCinPa - I'm starting to wonder if my Doc is not fighting hard enough for me. Like maybe she's resigned to the fact that she thinks I should just get the surgery, therefore throwing in the towel.

Suzy-Q & Poopydoop - Your stories are inspirational! Yours are the kind of stories that give me pause before jumping into surgery.

Geez.. wouldn't it be easier if we could just prescribe our own medication.. lol

I definitely feel like the remicade is somewhat helping because I'd be alot worse off if not. (5 bm's a day, some bleeding and urgency, but not terrible.) I do feel like 10mg might do it, but they've supposedly denied the increase 2-3 times.

I have a scope and endoscopy tomorrow, so maybe that will give me the ammunition I need??

I was seeing a doc who recommended that I see a surgeon before I went on Remicade (he made that recommendation via email!). I don't see that doc anymore. Max dose of Remi is working well. Who knows for how long, but I know there are other options (and more in the future) so I am hoping to live the rest of my life with my colon.

Maybe I have bad luck with docs, but I have found that I often have to prod them to get things moving. When I was on Entyvio and I started to flare I asked for a test to check my levels and increase my frequency. I was told there wasn't a test & I couldn't increase the frequency (I knew there was). Then when Uceris wasn't getting my flare under control he insisted on a colonoscopy before he would increase the frequency (he finally realized that was true) and I asked again to check the levels. He said he could get the frequency increased without that. But when he sent it to insurance he said that my Entyvio levels "may" be low. Insurance denied the request until my levels were checked (I think it might have been approved if he hadn't mentioned anything about the levels). They finally did the test, my levels were low and insurance approved the increase in frequency but by that time I was flaring badly and Enyvio didn't work. After that I vowed to be very forceful when it comes to things I know to be true. With Entyvio I wasted 4 months of flaring that I didn't need to if he had listened to me in the first place.

I try to keep in mind that Docs have 100s of patients to take care of and I only have one (me!) so I can devote more time to keeping up with the newest treatments that docs may not know about -- though they may know about things I don't too. I now have a new doc and we talked about that and he said he was open to my suggestions in case I know about something he isn't aware of yet. Hopefully I won't need to test that ;)

CCinPA - It makes sense that we have to be direct. Its funny because I'm a very assertive person but they don't like it when you steer the ship, so to speak..

limey - I've heard that from a lot of people on here.. That xeljanz worked well for them when nothing else did. I may have to try stelara first, but I'm hopeful that one of these medications will work for me.

I have an endoscopy and colonoscopy tomorrow, and I'm really curious to see the degree of inflammation...

I have BCBS too, btw. But I had tried Stelara. I'd ask your GI to try again. Stelara wasted my time. Oh, also wanted to add that I was also steroid-dependant for a long time before Xeljanz, like most of 2 years, majority of that I got by on Uceris though, thankfully.

I strongly agree that you should reach out directly to the insurance company. You may be on hold for awhile but usually they try to be helpful. Take super good notes.