My Mixed Feelings About Switching to Stelara

My Mixed Feelings About Switching to Stelara

I’m headed to Philadelphia, where my doctor is located (I’m in New Jersey) to start my new treatment regimen of Stelara. To say I’m not looking forward to it is an understatement.

Stelara was approved for the treatment of Crohn’s disease only about a month ago. Before that, an injection regimen of the drug was used very well in psoriatic arthritis patients. (Interestingly, my husband has psoriatic arthritis but he doesn’t use Stelara.)

The Stelara regimen for Crohn’s disease starts with an hour-long infusion in the infusion center (and I know how it goes — between the set-up and the monitoring before and after the infusion, I will be there for much longer than an hour), followed by a shot at home every eight weeks. There’s about a 34 percent chance that a patient will go into remission, and the remission could take almost a year to achieve.

Unless you’re someone like me.

Since I was diagnosed 15 years ago — and had symptoms for much longer than that — and have used so many different treatments, the chances that I’ll go into remission are much lower. My doctor refuses to give me odds, except to acknowledge it’s not nearly as likely as unlikely. Still, we have to try.

Stelara so new for Crohn’s

When I asked my doctor what side effects there were from the infusion, he said there should be none. I’m not sure I’m buying that. When I was on Remicade, after the first two infusions my muscles were incredibly sore for two or three days and I was pretty uncomfortable. So I’m expecting something like that.

The thing is, Stelara is so new for Crohn’s disease that when I Google it, I can’t find anything about actual patient experiences. For my doctor, I’ll be one of the first to be using it. Can you say #guineapig?

In the meantime, I went off Cimzia, which stopped working about two months ago. I’ve really been enjoying not getting stuck with a needle jammed into my stomach every week, but that’s about as far as my enjoyment goes. I’ve been holding it together with Prednisone (30 mg dose; every time I try to take it down to 25 mg I get incredibly sick) and Percocet (as needed). I’ve gained weight from the Prednisone, I’m bloated and uncomfortable, I’m tired but can’t sleep, and hate using painkillers just to get through sometimes. Stelara must be better than that, right?

I can only hope so.

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13 comments

  1. John says:

    Wow I can relate to your story I’m going in next week for my third Remicade treatment. It seems to be helping out but there are days when I have my doubts. I am very anxious to get back to work because if I don’t soon I heard I may not have a job next year if don’t get in soon to interview with the new sub-contractors. So I am really curious about this new drug Stelara and how its effective its been for you.

    • Judy Walters says:

      Thank you! Remicade works really well for some people. I was able to get on remission from it for about three months, but unfortunately, I started making antibiodies to it, and once that happens, you can’t be on it anymore. 🙁 It doesn’t happen to all people on it, so hang in there. I hope it all works out for you. This is a really difficult disease.

  2. Tammy says:

    Last Friday was my 2nd shot of Stelara. I too have been on AL and every drug out there fir CD
    I have had CD over 4 decades now. I’m so sick of being sick. As I right now I feel like I’m 9 mths pregnant. CONSTANTLY bloated unbearable pain night sweats zero appetite when I do eat I throw it up uncontrollable runs to the point that I have to wear diaper but I have no fever. Tired of being tired . Many sleepless nights first I’m hot then I’m freezing
    Only bit of relief I’m gettin is a tub full of warm water.
    Maybe I’m having reaction to stelera I don’t know nor does my GI. It’s a catch 22 do I continue the drug or stop
    No tests can be done in canada yet to actually tell if stelera is Workin or not.
    Check in or check out from canada..

  3. Lucy Frank says:

    Ian, I have been on Stelara, 90mg injected every 6/8wks, for exactly four years now, and it’s the first time I’ve been in remission in >20 years. Almost more important for my quality of life, the Stelara allowed me to get off the dreaded steroids — both Prednisone and Entocort — that I’d been dependent on for close to ten years. I don’t always feel well, even if the blood work shows no inflammation and the scopes show no Crohn’s activity. I still have some fatigue and, at least a few days a month, feel the same low-level lousy I’ve always suffered from. And it does nothing for the arthritis. But I am not ill, and that’s a major change. And I don’t have the constant diarrhea and abdominal pain. (I’ve had Crohn’s for 50 years and failed Remicade, Cimzia, methothrexate, and Imuran.) I sometimes feel very tired for a few days after the injection, but not always. And other than that I’ve had no side effects. So while I would love to feel like a normal person and forget I even have Crohn’s, I have to say that Stelara is the first drug I’ve ever thought has helped. And without life-ruining side effects.
    I hope it works as well for you.

    Wishing you the best of luck.

  4. Lesli says:

    Hi, I am supposed to start Stelara injections any day now. I was diagnosed with Crohn’s disease in 1979 with my first ileocolic resection in 1981. Post surgery, I went for nearly 15 years symptom free. Finally had my 2nd surgery in 2000 and my 3rd in 2010. The problem being, I am fairly asymptomatic until the scarring and blockage from the Crohns make it impossible to eat or drink. Active Crohns shows up in my colonoscopy’s but it’s really hard to opt for the chance of lymphoma (runs in my family) and skin cancer and lowering my immune system, just so I can prevent the next surgery.
    No one has spoken of the cancer concerns. Does anyone share my concern?
    Thank you and the best to us all!

  5. Robin Jackson says:

    I was diagnosed with crohn’s disease in 1999, but think it went undiagnosed since I was a kid. I’ve tried every drug available & waiting for insurance approval now for Stelara. I’m hoping this is a game changer for me, I’ve hada total of 20 surgeries & have complications with abcesses, fistulas, eyes,skin, joints, nausea & vomiting & pain. I finally quit smoking & wonder if that’s been keeping me from remission. I was just released from Mayo’s hospital where I was in severe shape. They informed me pain meds for crohn’s will shorten your life by quite a bit, so gonna try to only take it to get me through the really tough times, but hard when I’m always in pain, they say Tylenol should be my bsst friend just not more than 4 grams a day. I’m cancer free right now too, my Mom died of stage 4 colon cancer, but I have no colon so that risk is gone. I’m not living, I’m just existing & that must change!! Never Give Up

  6. James says:

    To the author, please please please get your bone density checked if you haven’t already. 30mg of prednisone will suck the calcium out of your bones. A supplement is not sufficient.. get them checked! The doctors didn’t tell me and I have a new hip at 37.

  7. Ron Newnes says:

    I have had CD for many decades along with many surgeries. I have been on Remicade for 11 years and was in remission. Recently I developed a large, nasty fistula on my old incision. I was hospitalized for 10 days on antibiotics and steroids. I am home now on TPN (lost weight) and had a Stelara infusion 3 days ago. I think the fistula may be coming back. Any luck with Stelara and fistulas? Sad.

  8. Jenna says:

    Love to hear an update about how you’re doing in Stelara. I’m about to start it after Imuran tried to take me out.

    • Judy Walters says:

      Sorry I’ve been remiss in the questions about whether Stelara has worked for me. I will do an update post next week, how’s that?

  9. Jennifer says:

    Hello, I would also love to see an update.
    I was diagnosed with Crohn’s in 1992 and have tried just about everything for it. Had a bad reaction to Remicade, so had to stop. Humira didn’t work and my insurance wouldn’t cover more frequent doses. I’ve been on prednisone continuously since 1993 although not always on high doses, just get flares when I get below 10mg.(I do have regular bone density checks.) I also take 6MP and allopurinol. My doctor brought up Stelara at my most recent appointment and thinks it may allow me to get off the other maintenance drugs. That sounds appealing, especially the prednisone.
    My biggest concern is what I’ve read about reversible posterior leukoencephalopathy syndrome (RPLS). I can’t find any good numbers regarding an actual number of cases or percentages, just that it’s “rare.” My doctor wants me to continue with the other drugs until we see if I respond to Stelara. However, from what I’ve been able to find, the chances of RPLS may be higher if combined with an immunosuppressant like 6MP.
    Does anyone have any thoughts on this?
    I’m also wondering if anyone has had relief from the arthritic pain and fatigue. Even when my Crohn’s symptoms are mild or gone, I’ve got continuous pain and fatigue.

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