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Colectomy or new drug?

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Posted 12/12/2018 6:05 AM (GMT 0)
Hi everyone! I have been non-responsive to quite a few medications, entyvio, simponi, and humira and have been considering getting surgery done. I have also heard of xeljanz, has anybody had any good experiences with it who haven't with others?
Posted 12/12/2018 7:06 AM (GMT 0)
No response at all to Humira and Simponi or partial response?

I think xeljanz is worth a try. It tends to work pretty quickly (anywhere from a few days to a month or two) if it's going to work. So you'd know pretty soon whether or not you respond to it.
Posted 12/12/2018 12:41 PM (GMT 0)
I failed Humira (non-responsive) and went straight to Xeljanz. I’ve only been taking it for a week so can’t really comment on effectiveness, but if you search “Xeljanz” the first thread that pops up has some pretty good info.

The only thing I’ve noticed so far is no more blood, and less urgency. I’m still running to the bathroom upwards of 10 times per day, but I seem to have a little more time to get there. Which is nice. My doctor said that while some improvement can sometimes be seen in a few days, it can also take up to 6 weeks to really start to notice any changes.

My point here is since you should know pretty quickly, might as well try? Maybe? Depends on whether or not you’re comfortable potentially giving up another 2+ months.

Can you start discussing surgery while you start Xeljanz, so you st least have everything lined up if it doesn’t work?
Posted 12/12/2018 1:18 PM (GMT 0)
I tried Remicade, Humira, and Entyvio. I'm currently at the 10 weeks mark with Xeljanz. I think I may have a little less bleeding and urgency but it's so slight it's probably just placebo effect. I choose to try Xeljanz to just give one last shot. At 8 weeks, I met with my GI and he gave me an option to try one more month or just go straight to surgery. I decided to try a little more. We will do a scope in the beginning of January to check to see if there were any changes. If not, I pursue surgery.

My GI told me before starting Xeljanz that it would also be a very reasonable decision to just have surgery at that point without trying another biologic. I just felt like if I didn't try it and I had trouble with the pouch, then I might feel a lot of regret. I am also a healthy weight and still able to work. I've been living this flare for 3 years now. I thought, what's a few months more? Now, I'll know it was my best option even if the pouch isn't perfect. It also gave me more time to research surgery and get a handle on the decision mentally.

So, at the end of the day, I think it is a very personal decision. I think it comes down to your quality of life and if you think you will have second thoughts or regrets.
Posted 12/12/2018 1:36 PM (GMT 0)
Xeljanz works pretty fast if it's going to, so maybe give it a try if you're not in total dire-straights? You've already failed 3-classes of biologics, so there's a point of diminishing returns where it's growing ever more likely that your resistant (refractory) to all treatments. It mostly comes down to quality of life, and how badly your symptoms are. Much easier to justify a surgery when you're flaring severely, and need an easy out.
Posted 12/12/2018 2:24 PM (GMT 0)
My understanding was that Stelara has a more pronounced response than Xeljanz? I’m not super sold on the mechanism of action of Xeljanz and the other Janus Kinase inhibitors as their role in autoimmune conditions seems less well understood (and I’m a medical writer and have worked in clinical trials most of my working life). Is Stelara available to you? The IL-13/23s have a much more established role in inflammation.
Posted 12/12/2018 3:27 PM (GMT 0)
I had surgery and never turned back. Xeljaz was only available by trial at that time, and my GI didn't feel like my likelihood of a response was high considering I had failed everything else miserably. I do think I would have tried xeljanz if it were available without a trial but I didn't want to end up wasting a lot of time, I wanted my life back, I didn't want to take any more steroids, and trials are time consuming. Like others have said, xeljaz works pretty quickly, so you could try it without losing 6 months. I would still go on a surgery consult and get all your ducks in a row, that way you can move forward with surgery if necessary
Posted 12/12/2018 6:12 PM (GMT 0)

WorriedUCer said...
My understanding was that Stelara has a more pronounced response than Xeljanz? I’m not super sold on the mechanism of action of Xeljanz and the other Janus Kinase inhibitors as their role in autoimmune conditions seems less well understood (and I’m a medical writer and have worked in clinical trials most of my working life). Is Stelara available to you? The IL-13/23s have a much more established role in inflammation.

I was feeling better in about 48 hours after my loading dose of Stelara and then it wore off. I had to start with the psoriasis dosing because when I started it was off-label. If you start now you start with a loading IV based upon your weight, an 8 week frequency instead of 12 weeks and 90 mgs instead of 45 mgs. I kept at it and stelara works really well for me now that it has built up in my system and I have the proper dosage.

I choose to leave some meds available to me prior to surgery in case I ended up with chronic pouchitis — which I did.

I would make the decision on your quality of life, if it is really brutal than I encourage you to go for at least a consultation.

I am very happy with my surgerical outcome, even with chronic pouchitis my life is better than when I had really bad UC.

The other thing is that some of these meds will basically make you ineligible for a 2-step procedure and you’ll need 3-steps. Some of it is based upon your surgeon but immunosuppressants slow the healing process.
Posted 12/13/2018 3:20 AM (GMT 0)
To those of you who have been through a bunch of biologics, how long did it take you to try them out?

I've been on Inflectra (Infliximab, Remicade biosimilar) since August 31, had 5 infusions so far (got a blood test during the last one to check the levels), but I'm still flaring. The GI wants to max out my use of Inflectra first before moving on to a different med (how long does that take?), but I'm growing impatient and worried that I've stopped responding to it already. Ugh this disease is making me so exhausted.
Posted 12/13/2018 1:07 PM (GMT 0)
Depends on the biologic, for inflectra/remicade then I'd say 6-8 weeks is sufficient to tell if you're going to get a response or not. You should have at least some positive improvement within that timeframe, and about 60-65% of people do get a response. A full remission can take longer than that, 4-6 months to a year.

What were your levels super low, thus the higher dosage?

Entyvio is notoriously slow, taking 12-14 weeks for a response in some. Xeljanz/stelara are pretty fast and I'd say equivalent to remicade in taking 6-8 weeks or so.
Posted 12/13/2018 2:07 PM (GMT 0)
After 3 months on Remicade, I switched because I had no response and my levels of it were high. After 2 months on Humira, I switched because I started to develop psoriasis and had no response. We may have tried a tad longer if I wasn't having skin issues. I think I was on Entyvio for about 4 months with no response. For Xeljanz, we are giving it 3 months.

Have you had any improvement with Inflectra so far? Has your doctor increased your dose or reduced the time between infusions? If your levels are good and you still feel exactly the same, I would push to get pre-approval for another drug started. Not sure about your insurance but mine always took about a month for a new med to get approved.
Posted 12/13/2018 2:57 PM (GMT 0)
We gave Humira 4 months before calling it quits because I had some very slight and cyclical initial response before tanking. With the Xeljanz she wants to see progressive improvement by 6-8 weeks. They’re all different, but most take significantly longer to see substantial improvement than anyone would like.
Posted 12/13/2018 3:17 PM (GMT 0)
Surgery isn’t bad; unless you end up with a permanent stoma.
Posted 12/13/2018 4:10 PM (GMT 0)
^^ and even if you end up with a permanent ostomy, that may still be better than uncontrolled UC.

I think it’s important not to villainize specific procedures by projecting our own bias on someone else’s experience. Especially when people are dealing with the possibility of surgical outcomes. /soapbox ;)
Posted 12/13/2018 4:19 PM (GMT 0)
Agreed, I have heard many stories of people being very satisfied with their ostomies. I know I would take one over dealing with what I am now for the rest of my life.
Posted 12/13/2018 5:52 PM (GMT 0)
Anyone who has not experienced living with a stoma (from a total colectomy, or at least most of the colon is taken out) should not give their opinion on this thread.

First know what it is like to live with a stoma, then give an opinion on a comparative question. You don't know the other option enough to make a comparison. You need to live with it to understand how it actually affects you, and your life.

To the OP: have you tried oral/rectal mesalazine? Immunosuppressants? Combination therapies? Elimination diets? I would try everything before moving onto the surgery; unless you are in an emergency. If nothing helps, partial resection could be very helpful to calm things down, and make a new start with treatment.

Post Edited (xy123) : 12/13/2018 11:05:47 AM (GMT-7)

Posted 12/13/2018 6:10 PM (GMT 0)
I don’t think anyone but you has given their opinion. And by your own logic you oughtn’t have done that since you haven’t lived anyone else’s UC flare.

Personal opinion is ultimately irrelevant: everyone’s experience with an ostomy is is different, and many people prefer it to active flaring.
Posted 12/13/2018 9:12 PM (GMT 0)
As someone who had an ostomy -- I could live with an ostomy, it's much better than crapping myself in public or living in my house 24 x 7 x 365. I felt really healthy with my ostomy.

With that being said, I felt so much better after I woke up from colectomy. My colon was poisoning me from the inside. My GI jokes that you wake up from the colectomy and you feel like the monster has been removed from your body.
Posted 12/13/2018 9:27 PM (GMT 0)
ks1905, may I ask you how many bowel movements you have in a day, generally? Do you suffer from dehydration more easily than the general population because of the lack of colon? How is your blood pressure and heart rate? Does your pouchitis respond to rectal meds?

I had a very stubborn area (left colon) that was unresponsive to meds, and the resection of that area affected my health in a very positive way - which would probably never happen with the medications.
Posted 12/14/2018 12:10 AM (GMT 0)
I’m really regular, three times a day depending on food intake it can fluctuate. Once in the morning after I wake up, once towards the end of my work day or when I get home and then once before I go to bed at night (11 pm). Never urgency and I can hold it for hours.

I personally haven’t suffered from dehydration, I’ve always managed to stay hydrated throught my life.

Hypertension runs in my family so I was taking blood pressure meds prior to surgery so I can’t help with that question.

I’ve used Canasa without much improvement and I refuse to take steroids since my hip replacement due to steroids killing my hip. I was on antibiotics for 3 years for pouchitis and I decided it was time to move on to a biological.
Posted 12/14/2018 2:24 AM (GMT 0)
iPoop, partlycloudy:
The GI at the hospital decided that I should start Inflectra after a failed transition from IV steroids to Prednisone which caused me to faint after 2 days of bloody BMs. My first dose was at what I believe is the normal dosage at 5mg/kg. One week later, I was still having bloody mucus so the GI told me that they are going to be more aggressive and give me another dose at 10mg/kg (one week after the first one). Two weeks after my second dose, I got a third dose at 5mg/kg. My fourth dose four weeks later, and fifth six weeks after that (both at 5mg/kg).

I was symptom free half a week after my second dose (aside from some pain during BMs for the first week) and remained symptom free for four weeks while tapering Prednisone. Then I started seeing a bit of blood just before my fourth dose and halfway through my course of Prednisone, then things started going downhill again. Long story short, I ended up in the hospital again (two months and a half since I got discharged), that's when the GI decided to push my fifth dose forward by two weeks, try to max out inflectra/check levels, and check to see if I can take Aza with inflectra.

No results on any of the blood tests yet. I do have an appointment with my GI before my next dose of inflectra (8 weeks after the fifth dose) and hopefully I'll get some answers then because I haven't been so lucky this time (got discharged from the hospital okay, got my fifth dose the next day, got a bit of bloody mucus with my once per day normal BM that progressed into bloody (not horribly) BMs roughly 3 times a day, and I've just begun my Prednisone taper).

Personally I'd drop inflectra if it's not doing anything (less meds to be on and save money) rather than be on both inflectra and Aza. My GI also said that I shouldn't be on so many immune suppressors at a time (Prednisone, inflectra, Aza) anyway. And if TNF-alpha is not the thing causing my UC, then inflectra really isn't helping.
Posted 12/14/2018 2:27 AM (GMT 0)
I didn't mind my ostomy a ton. At least i wasn't worried about pooping my pants all the time. It gave me freedom and confidence. I was able to take trips, work, enjoy life. Something I was unable to do living with severe UC.

I have a jpouch now, and I live very normally. I rarely go to the doctor, haven't been to a GI since surgery. Haven't been to my surgeon in a few years. Only went to my yearly in the past few years... I don't take a single drug, haven't been readmitted and haven't gotten sick at all or dehydrated. I used to get colds constantly when I was living with UC and on meds. I also haven't had a single accident or leak.

I do however think I have been very lucky, at the same time, I think there are a lot of people who have good results, they just do not hang around and post here. Most move on with life. Yes, I go more than normal people, i usually get up once in the night at 4 or so. I went 2x today, but other days I may go 6x or 8x. I really don't keep a count. Going is like urinating. You go in, release, wipe, and done! I can do both at the same time, and be in and out in no time.

I don't want to paint a picture like it's better than a colon, because it's not. I'd love to go 1x a day, but i don't want to live worried about drugs and insurance. I don't want to worry about the expense, the impact of the drugs, or the accidents.

xy, do you have experience with an ostomy? Was it a loop or an end? Loops are terrible - mine was anyway, some people have an okay experience with it.
Posted 12/14/2018 2:33 AM (GMT 0)

k1002 said...
iPoop, partlycloudy:
The GI at the hospital decided that I should start Inflectra after a failed transition from IV steroids to Prednisone which caused me to faint after 2 days of bloody BMs. My first dose was at what I believe is the normal dosage at 5mg/kg. One week later, I was still having bloody mucus so the GI told me that they are going to be more aggressive and give me another dose at 10mg/kg (one week after the first one). Two weeks after my second dose, I got a third dose at 5mg/kg. My fourth dose four weeks later, and fifth six weeks after that (both at 5mg/kg).

I was symptom free half a week after my second dose (aside from some pain during BMs for the first week) and remained symptom free for four weeks while tapering Prednisone. Then I started seeing a bit of blood just before my fourth dose and halfway through my course of Prednisone, then things started going downhill again. Long story short, I ended up in the hospital again (two months and a half since I got discharged), that's when the GI decided to push my fifth dose forward by two weeks, try to max out inflectra/check levels, and check to see if I can take Aza with inflectra.

No results on any of the blood tests yet. I do have an appointment with my GI before my next dose of inflectra (8 weeks after the fifth dose) and hopefully I'll get some answers then because I haven't been so lucky this time (got discharged from the hospital okay, got my fifth dose the next day, got a bit of bloody mucus with my once per day normal BM that progressed into bloody (not horribly) BMs roughly 3 times a day, and I've just begun my Prednisone taper).

Personally I'd drop inflectra if it's not doing anything (less meds to be on and save money) rather than be on both inflectra and Aza. My GI also said that I shouldn't be on so many immune suppressors at a time (Prednisone, inflectra, Aza) anyway. And if TNF-alpha is not the thing causing my UC, then inflectra really isn't helping.

Have you had stool tests done to rule out superimposed infections?

Are you still on prednisone? If so, what dose?
Posted 12/14/2018 2:53 AM (GMT 0)
beave:
Just went down to 30mg of Prednisone today.
Three weeks ago at the hospital, they took biopsies during the short colonoscopy and ruled out viruses. I think I was supposed to get a stool test for c diff, but it didn't happen (I had solid poop by the end of my hospital stay so I think c diff is unlikely...?).
Posted 12/14/2018 3:01 AM (GMT 0)
They probably ruled out CMV when they look at biopsies for viruses.

c.diff is unlikely, but it should be checked just to make sure anytime somebody isn't not responding to a biologic, especially after a couple of hospital stays.
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