Just saw my GI and he's recommending Xeljanz, but I'm scared

After 1 year on Entyvio, recent FMT treatment, and a recent colonoscopy that shows mild to severe disease, my GI is recommending Xeljanz. I read about the possible side effects and complications and it freaks me out. He said surgery is another good option for me, but I was in remission for about 10 years, and I'm not ready to sacrifice my colon. However, Xeljanz isn't looking like a great alternative either. I guess the thing that holds me back the most right now is I am feeling SO much better than I did a year ago. If I feel so much better physically and emotionally, it seems like my stomach should also eventually follow. Yes, I still see blood on some days, but I have more days without blood than with now. I'm only waking up once in the middle of the night and using the restroom 3 to 4 times per day. The stress of this new information may stir things up a little, but this is a lot to process. What are other people's experiences with Xeljanz?

Hi Keith- Thank you for the reply. Yes, Remicade didn't work for me and I developed an allergic reaction to it, too. I haven't recently tried the enemas. In the past I couldn't hold them in for long because I was so inflamed and didn't get results. I could try them again, but the severe inflammation is located at my cecum (right side), and I don't think enemas will help / reach that section. Not sure why my signature didn't show meds. Hopefully, it will populate this time.

hi I have been on xeljanz for a couple of weeks. Have zero side-effects. Not sure it does anything for my colitis but that's another story....

What scares you so much about xeljanz? I ask as the safety profile is no different than the entyvio or other biologics you have taken in the past.

We've had some success stories on xeljanz, some who tried it and had no luck, which is pretty much normal for all UC treatments. I'd say it is worth a shot, xeljanz usually shows a response in about 6-weeks time, and then either keep it or move on to something else.

Oh, and one more thought. Combination-therapy often helps us when nothing else does. That is, entyvio alone might not be your 100% solution. Rather, you might need entyvio, plus imuran/azathioprine, plus mesalamines like asacol/lialda to initially achieve a remission. Given, it always takes more meds to initially achieve a remission than to sustain it. So, once in a sustained remission, you can start tapering off some of those meds.

Xeljanz has been shown specifically to give a higher risk of getting shingles than someone not taking any drugs. But when i compared the infection rates to azathioprine they were actually comparable, and i didn't spend my time on aza worrying about shingles. Plus as my dr told me if i did get shingles: "It's horrible but you'll get better".

Does getting the shingles vaccine beforehand help? Other than that, seems comparable to other treatments. I wouldn't fear this over other treatments.

There is now an inactivated shingles vaccine my doctor wants me to take before starting Xeljanz. What scares me about the Xeljanz is the slightly higher cancer rates (https://www.rxlist.com/xeljanz-drug.htm). I've already had thyroid cancer and the radioactive iodine treatment and preparation for the treatment sent me into a full blown flare about 14 years ago. Some doctors felt the 6MP I had taken for many years could have contributed to the thyroid cancer. I talked to my doctor about adding another medication, but he thinks Entyvio just isn't working for me and doesn't think adding another drug is the solution, but rather changing it. I do have an appointment with another GI in early April (the soonest I could get in as a new patient) because I often feel like a number there with my current GI and he seems to have a regimented protocol, rather than really looking at the individual and the history. So, maybe I will wait a bit before changing medications and get a second opinion first. My GI had previously told me that I would need to be on Entyvio a minimum of 2 years to reduce the likelihood of developing antibodies. If I go off prematurely, don't the chances of it helping in the future diminish? I'm not sure about blood testing to determine if I'm at a therapeutic level of Entyvio, but will look into it. Thank you for all the advice and suggestions. I guess I just need to determine if combination therapy with Entyvio is my next step or trying Xeljanz.

fwiw this is the "xeljanz is not a biologic" press release from pfizer:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5198242/

I think the advantage of this is that you don't develop antibodies to it...

I am going to ask my dr now about deactivated shingles vaccine but I guess even that may be risky if i already started taking it. Honestly if I had known I would end up in this situation I wish I had done all the vaccines (yellow fever, pneumovax etc) when I was first diagnosed.

By the way, I have been allowed to overlap entyvio and xeljanz. I had my last entyvio infusion 12 days before starting xeljanz - so that if I do not respond (enough) to xeljanz I can still continue with entyvio.

I love your perspective. It is definitely an emotional rollercoaster being on "the last drug before surgery". And I can identify with all the positives that you mention post (successful) surgery. With cancer I imagine it's hard to know if you did or didn't get it because of the drugs...

Thanks ipoop, i am learning microbiology from your posts Since we are on a role, this is the "why is xeljanz so expensive?" article, very interesting (if only to see that people working in pharmaceuticals are just like you and me...)
https://www.theday.com/article/20121111/BIZ02/311119920
Xeljanz should be squeezed on price in the future as generics will become available and moreover, the next generation of jak inhibitors (upadacitinib, filgotinib) which are more selective, will compete with it for the same medical conditions.

Hi little bear,
The new shingles vaccine (called Shingrix) is much more effective than the old one (Zostavax), which was a live vaccine and therefore not suitable for immunocompromised patients. However, this one is an inactivated vaccine, meaning it is incapable of replicating, even with biologics so you can still take it. In contrast to the old vaccine which was only about 65% effective, this one is 98% effective.
Regarding cancer, my understanding is that all biologics increase your risk slightly, but then so does uncontrolled disease, so it may be much of a muchness.
Regarding Xeljanz, I’m not super familiar with it over other biologics such as Stelara, but my mum does take it (for rheumatoid arthritis though). It has caused zero side effects in her, but of course everyone is different. You will just have to try it and see. You mentioned that this is the last drug before surgery, but who decides that? Your doctor? What if you said that you didn’t want surgery and wanted to try one more drug after?

Just for clarity sake do we think that someone could take xeljanz and remicade at the same time?

Yeah since xeljanz already doesn't have the best clinical trial data for opportunistic infections adding it on top of a systemic immunosuppresent anti-tnf like infliximab would not be the best idea. Although I am always interested in the idea of combo therapy with biologics like vedolizumab and infliximab. They did a small experiment for CD patients but I haven't found anything for UC. I always tell my Dr that if anything pops up for a UC trials to let me know because I would be interested.

As for xeljanz make sure you doctor checks your lipid levels at 4 and 8 weeks after you being taking it.