A 35 Patient Survey about Taking Remicade
to Treat Ulcerative Colitis Symptoms
To find out if there are similarities when it comes to taking Remicade (Infliximab) for treating Ulcerative Colitis with respect to effectiveness, side effects, and the decision to continue use of the medication in the future. The 35 people who took part in the study are assumed to have been formally diagnosed with ulcerative colitis, however that has not been confirmed. Everyone who participated in the Remicade Survey completed the questions online during the month of September, 2011. Remicade is an ulcerative colitis medication that is growing in popularity, and is also used to treat other autoimmune diseases such as arthritis and rheumatoid arthritis. Recently, Remicade was approved by the FDA to be used for treating Ulcerative Colitis in pediatric patients.
The Remicade Survey Questions and Answers:
Question #1: Before taking Remicade the 1st time, for HOW LONG were you diagnosed with Ulcerative Colitis? (35 of 35 participants answered this question)
- between 1-2 years: 9 people
- between 2-3 years: 6 people
- less than 1 year: 6 people
- between 5-7 years: 4 people
- more than 10 years: 4 people
- between 7-10 years: 4 people
- between 4-5 years: 2 people
- between 3-4 years: 0 people
Question #2: Were you worried or scared before getting your first Remicade Infusion?
- Yes!!! I didn’t know exactly what they had to do and how long it would take
- Nothing could have been worse that was experiencing, I was happy to try it. And forever grateful I did!
- Yes I was super nervous and probably read every website out there on remicade. I also talked to everyone I knew who had been on it multiple times.
- Yes to both. I was anxiously optimistic. None of the oral meds were working to get me into remission. I researched a lot prior to agreeing to start Remicade. I also have an aunt that had successfully using Remicade for about a year and a half before I started.
- Scared of the possible side affects
- No, as it was given to me in hospital as an emergency measure
- I was horrified. I researched online and heard so many horror stories. But my doctor reassured me that I would be ok and not to go online. I was at the point that prednisone was no working for me anymore and my doctor wanted to do surgery which I was not going to do. So I went for it and I am so glad I did. Remicade is the most amazing medicine I have ever taken for my Ulcerative Colitis. I highly recommend it if your doctor is suggesting it. I went from being in the bathroom 24/7 and wearing a diaper when I went out to no diaper and less bathroom time.
- Yes!! I was also desperate for something that helped though!
- I had been admitted to the hospital and was unable to research Remicade. The nurse gave me some info, but not much at all. I had my first infusion the day I was discharged from the hospital. I was also put back on Prednisone while in the hospital. I currently take Lialda (4 pills, once a day), Rowasa Enema’s (once a day at bedtime), Levsin/Hyocyamine (as needed every 6 hours for pain), Canasa suppositories (as needed to stop the bleeding).
- Wasn’t afraid more hopeful it would work
- Not really, by that time I had been in the hospital over 2 weeks and just wanted something to work.
- Yes. I was very scared and nervous before getting my first infusion. I was scared because I knew that I was getting closer to the point where surgery was being brought up more and I personally didn’t (still don’t) want to go there unless it’s my last option. I heard all of the horrible side effects that can accompany the infusions. I also had to travel an extra 30 min. farther so that was another thing. Thankfully, when I got there for my first infusion everyone was very kind and patient with me. They explained everything that was going to happen and answered any and all questions that I had. They made me feel at ease.
- Scared of lowered immune system.
- I was worried about how much my insurance would cover Remicade. I was unsure how it would make me feel.
- Side effects, effectiveness
- I was pretty sick and felt the doctor did not do a good job explaining Remicade. He kept saying it was a big decision and mine to make, but didn’t explain what it was.
- The Doctor and nurses had to tell you about some if not all the Remicade side effects that are possible, and the fact that here in Canada at least, you had to have an aids test and a TB test as well. Those things tell you that you’re getting something “big”. And the cost.
- the fact that my immune system would be shot, and I would be more open to sickness.
- My first Remicade infusion was part way through a hospital stay due to uncontrollable UC symptoms and a bad reaction to 6MP. So I was desperate for something to work!
- Yes very worried and scared. I am a critical care RN and am aware of side effects and possible outcomes from this drug and combo therapy including this drug. Although rare, side effects that are bad may occur. After careful consideration on all data I decided to go forward with Remicade. I had first infusion 3 days ago. I am hopeful and still scared.
- I have two young children and was worried about the side effects of nausea and fatigue. luckily, I’ve not experienced nausea.
- The possible side effects or Remicade not working or the infusion hurting going in but it was fine and I had no adverse reaction.
- Worried about side effects.
- That it wouldn’t work.
- Not really
- No I was more excited than anything. I had been thru hell and back and I believed (and still somewhat do) that this was going to be the medication that makes the difference.
- No! I felt like it was my only option other than surgery
- I was a little worried about the side effects.
Question #3: How Effective was your FIRST Remicade Infusion with Treating your Colitis? (35 of 35 responses)
Positive results within 2-3 days: 15 people
No change at all: 6 people
Very minimal results: 6 people
Positive results within 7 days: 4 people
Positive results after 7 days: 2 people
Positive results in less than 24 hours: 2 people
I had a bad reaction while getting the infusion. They pulled out the IV immediately: 0
Question #4: Did the Remicade continue to work before your 2nd Infusion? (35 of 35 Responses)
It started to wear off, but kinda still working: 13 people
It never worked after the 1st infusion, but I decided to try again anyways: 10 people
Yes and I was so happy: 10 people
No it didn’t work, and I decided against a 2nd infusion: 1 person
Yes it worked, but my side effects were so bad I didn’t get a second infusion of Remicade: 1 person
It wore off completely, I was seeing Ulcerative Colitis symptoms again: 0 people
Question #5: How was your 2nd infusion of Remicade? (35 of 35 responded)
- OK…first time was also OK, I still have symptoms, so not sure about this stuff longterm: 10 people
- Great. Just like 1st infusion, my symptoms are still in remission: 8 people
- Great, worked much better than first infusion: 7 people
- Bad…just like the 1st infusion which did absolutely nothing for my colitis symptoms: 4 people
- OK…It’s not working as well as my 1st infusion, symptoms came back much faster.: 3 people
- None of these options are even close: 2 people
- Bad..First infusion was good. This one is doing nothing as my symptoms are back again.: 1 person
- NEVER TOOK the 2nd infusion, stopped after 1st time. 0 people
Question #6: Did You Experience any Side Effects from the Remicade? (35 of 35 responded)
- Yes: 16 people
- No: 12 people
- Not Sure: 7 people
Question #7: IF you did experience SIDE EFFECTS from the Remicade, what type? And did they go away? (21 of 35 responded)
- Slight itchiness at the injection site for a day or two, nothing major. Also get a bit sluggish for the rest of the day after getting each infusion.
- Joint pain got really bad
- Allergic reaction everytime but I continued to get Remicade. They would just slow down the infusion, when I started to get all itchy and breakout in welts. I also got Benadryl and Tylenol.
- Just swelling and soreness around iv site for a few days. However, after 4 infusions had to move from every 8 weeks to every 6 weeks but after infusion #5 developed drug-induced Lupus- so stopped.
- I was very cold for several days after the infusion 2 and 3 and very, very sleepy. Yes they went away after a few days.
My hips and lower back hurt if I walk even a short distance. Still have this side effect.
After the 3rd infusion, I had a headache for weeks. Now that I’ve weaned off the Prednisone, the headache has gotten worse, my hair is falling out in handfuls and I feel sick to my stomach. I think I am going thru Prednisone withdrawal.
- Maybe some seborrheic dermatitis, but not 100% sure it’s the Remicade
- Thankfully, about the only thing that happens to me after infusion is I’m very tired for a few days after and sometimes my body gets sore and achey.
- I had anxiety for the rest of the day after infusion, but usually passed by next day!
- Hair loss, some joint pain, nausea after infusion.
- Grogginess, sore throat and lots of joint pain. Scheduled infusions on Friday so I could recover over the weekend.
- Nausea, fatigue and muscle ache
- Not yet
- I’ve experienced mild arthritic symptoms as the remicade wears off.
- Weight gain, tiredness and headaches. Maybe bad skin I am not sure.
- I seemed to get more migraines at first.
- It makes my arthritis pain worse, & it has not gotten better.
- Difficult in breathing
- Nope. Thank God. I’m hopefully done with medication side effects.
Question #8: What medications did you try prior to taking Remicade? (34 of 35 responses)
- Asacol HD and prednisone, which I am still currently taking
- Asacol and Prednisone 40mg
- Pretty much everything you can before remicade up to azathiopre/6mp
- Lialda, Asacol, Sulfasalizine, Prednisone, Imuran
- Lialda and prednisone
- Asacol, prednisone, imuran
- Everything that is out there. Nothing worked except Remicade. But I got pregnant while on Remicade and had to stop the infusions. After I had my son, they said I was off Remicade so long that if I were to go back on it, it would be like poison. Something about antibodies. Few years later while in hospital I asked for Remicade and got one infusion but it did nothing for me. I had to start Humira and I hated that stuff. Shots were soooo painful I would scream, it was the medicine, it burned bad!!!
- Asacol, sulfasalazine, immuran, methotrexate, canasa, rowasa, prednisone.
- Asacol; JOKE
prednisone: FATTY MCGEE
- I’ve been on Prednisone 3 times this year already. While in the hospital, a GI doc advised that I shouldn’t be on steroids more than once every 2 years. I’ve tried Asacol, Flagyl, Rowasa Enema’s, Entocort (side effects caused ringing in my ears and I could not hear. Ringing got louder after several day until sounds were echoing. GI took me off Entocort). Miralax, Magnesium Citrate, Amitiza, Cipro, Prevpac, Imuran, Lialda, Canasa suppositories.
- Predisone, Asacol, Azazan, Apriso
- Lialda azizoprine prednisone
- Lialda (mesalamine), entocort (hydrocortisone enemas), solu-medrol (prednisolone)
- Prior to trying Remicade, I had tried Asacol and 6MP-which gave me acute pancreatitis and landed me in the hospital for a week. I had also been on and off of prednisone.
- Asacol…mercaprine…foam enamas..predisone..
- prednison, colozal,asacol, steroid enemas!
- Asacol, Imuran, Prednisone, Lialda
- Mercaptopurine, Apriso, Asacol, Predisone.
- Asacol, Colozal, 6MP, Canasa, Predisone
- Immuran and prednizone
- Colozal and 6MP
- Mesalamine, Imuran, prednisone, pentasa, roadway, corticosteroids, mislead, colazal, diet changes,
- prednisone, apriso, asulfadine, asacol, enema (i can’t recall the name?)
- I was on Imuran/Aza, prednisolone, salazopyrin, pentasa, and lots of steroid foams.
- Lialda steroids
- Multiple pills. The only thing that worked was prednisone.
- cortisteroids, prednisone, enemas, sulfasalazine
- Prednisone, Asacol (which still currently taking), as well as 6mp and canasa (both of which I’m taking as well)
- Azathiaprine, 6-mp, balsalazide, asacol, sulfasalazide, presnisolone
- entocort and prednisone
Question #9: Are you planning on using Remicade for long term colitis treatment? (33 of 35 responded)
- Nope, it doesn’t work for me, my system seems to be immune to it: 10 people
- Heck Yeah I Am! My Colitis is in Remission!!! : 10 people
- Still debating, It’s working, but I’m still not happy with it. : 5 people
- Yeah, even though my colitis is not totally cleared up : 5 people
- No, I’m too worried about side effects : 2 people
- I CAN’T, the Remicade is not covered anymore by my insurance : 1 person
Question #10: What advice would you offer to another UC’er who is taking or may need to take Remicade? (24 of 35 responses)
- I would recommend at least trying it. It seems like a great drug but it is way too expensive. After this year I can’t afford it anymore. I’m going to attempt to keep healthy with strict diet
- Try it!
- Research all options, but do not let yourself get too worked up by the possible side effects. All medications have possible side effects you just need to find which meds work best for you.
- It works for some people. Just didn’t work for me. I had 3 infusions and then decided to get my colon removed.
- Above question- I’m not worried about aide effects I haven’t been prescribed any more infusions. I would advise you to listen to your GI but not to do it if you are not comfortable with it.
- I loved it before I was pregnant and when it worked.
- Keep using it…it really works. They had me get remicade infusions once every eight weeks. But my UC side effects came back before my next infusion. I went to every seven weeks to every five weeks which is better for me. Do not be discouraged. They personalize it for you.
- Try it if you’re comfortable taking it. It worked for me and I felt great for 6 months! Maybe you will be the lucky one who doesn’t develop any side effects.
- It was like a placebo for me. Didn’t do a thing for me. Yet, my geometry teacher in high school swears that it is the miracle cure for her flare ups. So I guess it depends on you.
- Research all you can about the side effects and the positive responses from people receiving Remicade Infusions. Ask your doctor any questions you may have and keep notes.
- Do it!
- Make sure you’re really well hydrated before the infusions.
- As far as advice, don’t be scared and be well informed. Talk to others while getting your infusions you may make some new friends. Bring snacks, a good book, or take a nap if you can!
- Try it, but find out from the doctor how long you should know before it works. Also ask if you will experience flares while on it.
- If it works stick with it
- Stay on top of it – if you need infusions more frequently to feel good- fight for it!
- Too early yet
- make lots of money
- Ask your Dr if there is any other med you can try before remicade the only reason I am saying this is once you go on remicade and come off again you can’t go back on it again! As you can have a severe allergic reaction to it. It’s time consuming as it took a day out of my life every six weeks and if you want to travel just go for it before you start because it is almost impossible to get it. Also if you are in the States where remicade is really expensive look into getting assistance before you start as you don not want to be on it and have to come off it due to lack of funds. Sites such as the following have info on reduced price remicade or free remicade – http://www.remistart.com/. Good luck!!
- Make sure you have good insurance because this stuff is EXPENSIVE.
- Try it. After about a week from my first infusion I didn’t have to look for a toilet every time I went out any more.
- Be sure to check with insurance, mine covered 80% but each infusion costs around $5,000 so I was responsible for about $1,000 for each infusion. I had approximately 6 infusions before we decided it wasn’t working, I’m down to $2,500 that I still owe the hospital where I received my infusions. I ended up having my colon removed.
- It’s a miracle drug if it like you and works well for a limited time, don’t rely on it, you will find it will get less effective, find other things to help like diet.definitely go for the benedryl and a side of solumedrol
Thank you to everyone who participated and added data to this Remicade survey. Hopefully this user generated information will be useful to other people currently using Remicade or future users of this medication aimed at our “auto-immune” disease. To make sure you receive future IHAVEUC surveys and news, make sure get on the free: Newsletter Sign Up List
I started site and the eNewsletter(you can join that below) shortly after being diagnosed with ulcerative colitis in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
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