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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23 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..

    • Holly says:

      I use get the bloating, loss of appetite and night sweats as well, but since my GI dr started me on humira, I’ve been able to eat and the night sweats and bloating are gone.
      Good Luck on your journey of findimg comfort, crohns disease can be very depressing, alot of the time I feel quite alone as no one else in my family has crohns, and im unaware of any local support groups in Iowa.

  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.

    • Myriam says:

      Hi, I’m a very nervous candidate that has been chosen for this drug. I’ve had Crohns for 20 years and Remicade unfortunately was allergic to. Was moved to Humera and thought life was fine manageable for a crohns person I had figured.. suddenly I start coughing blood clots and fresh blood. I am not concerned and assume it’s just crohns moving. But am told I have spots on my lungs, a 5cm growth on liver, abnormalities on stomach, etc all caused from Humera stopping treatments. Problem my crohns is severally active I’m barely hanging onto 105 pounds and struggling scared to jump into another unknown. Can you tell me how this new biologic is working for you to restore some faith in me from another patient out there instead of s Dr trying to study me. thanks.

      • Judy Walters says:

        I don’t blame you for being nervous. It is hard to constantly go from one drug to the next, trying to be hopeful but not too hopeful and knowing you could get sick. I feel your pain. Stelara has so far been more helpful than not. I’ve been on absolutely everything and at this point, I just want some peace.

  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.

    • Muriel Eby says:

      I agree!! My Fatigue is UNREAL… like slept 17 hours Saturday! Headache everyday, different aches, MOODY! Only had infusion two weeks ago! But FEELING CONCERNED 😳!

  10. Al H. says:

    I, (somewhat) just started Stelara… had the infusion and one subQ injection after being on Humira for a couple of years before it began to loose it’s effectiveness. As I ready for my second SubQ injection can’t say that I have noticed any improvement in my condition. For those of you out there still on Stelara how long would you say it took before you began to notice positive results. I have read anywhere from 3 to 12 months. Any input would be appreciated. A.H.

  11. Daniel says:

    Diagnosed at 18 here in High School. Bounced from Asacol, Imuran, Humira, Cimzia, was on various study meds for awhile. This is my last thing to try before surgery. Got an infusion a week ago now and no change yet. I’m sure hoping by week 3 I see something. No crazy side effects though from the infusion. They got me in and out of there quickly and it was pretty easy. Good luck and I sure hope it works for you guys.

  12. Chris says:

    I was diagnosed with Crohn’s Colitis about 4 years ago, and it is very aggresive. About a year ago I had to have an Ileostomy done to relieve my symptoms (mainly anemia) and give the downstairs a chance to heal. I have tried Humira, 6MP, Remicade, Methotrexate, along with numerous steriods with zero luck at all. My doctor wanted to try Stelara when she realized that Remicade was not working. I’m her first patient to try it, so she’s pretty excited to see how it works for me. I received my initial infusion on August 8. After about three weeks I started noticing a huge change in my symptoms–for the better!! I haven’t had this much relief from my symptoms using any of the other treatments. I’m a couple weeks away from the first maintenance dose, but I’m very excited so far.

    • Jason says:

      I’m so glad for you Chris. My mother, who is in her early 80s has been suffering from Crohn’s for at least the last five years. She has tried methotrexate, Pentasa, 6MP (nasty), entocort, prednisolone and now Humira. The best drug so far has been prednisolone. Dr wants her to consider Stelara now. I understand Stelara is fairly new in Australia. She is not open to trying new medications and it has been a long road of negotiation and discussion to get her to try anything. She also sensitive and already has osteoporosis and is frail so I worry more about how she will respond to Stelara. best wishes, Jason

  13. Deborah Gerdes says:

    I started Stelara infusion this morning. Here’s what happened. I felt a little dizzy, then like I couldn’t catch my breath. Next thing I know I’ve got an oxygen cannula on and nurses are tapping my face like waking someone up, yelling are you ok. Dr was called. They stopped infusion started saline drip. After 10-15min I was myself again. Dr said try again at half dose. Within minutes, same reaction. Has anyone else had this happen. My email is janddg2@yahoo.com. I put that in because often I cannot get back to these sites so I never know if anyone answered. Thank you

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