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Questions, experiences and reviews (12)

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Once a person begins having Remicade infusions for Crohn's Disease, will they ever be able to stop?
Do Crohn's patients have to take Remicade indefinitely, in order to stay in remission? If Remicade does need to be discontinued, how is that done? Gradually tapering off? Any other Remicade tips? Thank you.
Elisabeth L
01/28/08
Reply
  hi elisabeth, i am a female crohn's survivor like yourself.
I was on remicade infusions but had to stop it because it stopped working. If Remicade works, then the infusion schedules will vary according to the pt. and symptoms.

When it first came out, I had the infusion and it kept me in remission for 1 1/2 yrs. Once my symptoms came back, I went in for another infusion. That lasted 1 yr. My 3rd infusion, after a few weeks, I knew it didn't take so I cld my GI and he put me on Entocort. When Humira was approved for Crohn's he cld me and put me on that.

You don't need to taper for Remicade if it stops working. Most infusions are done in an outpt. setting like in a hospital. Plan to spend 7-8 hrs. because the new protocol is premedication w/Benedryl to prevent hives and shortness of breath. Bring a book, ipod, magazine, etc. to entertain yourself as well as something to eat. The nurses will monitor you every 15-20 minutes to make sure there is no reaction.

The Crohn's & Colitis Foundation of America has a website w/information on the newest treatments, diet info, women's issues, surgery, locating a local support group etc. They even have a hotline & live chat that is run by healthcare workers well versed in IBD M-F 9 am - 5pm. Give them a call and see what they say.

I hope the treatment works for you. This disease is a pain in the butt. no pun intended. Feel free to email me if you have questions. I truly understand your concerns and where you are coming from.
common sense
01/29/08
Is Remicade safe overall or does it have too many side effects?
I have severe Ulcerative Colitis that goes up into my transverse colon. One doctor recommended surgery but I'm young and I want to keep my colon. Most other doctors recommend trying Remicade. I keep hearing of the side effects and I wanted to know if anyone has been on Remicade or knows people on Remicade and how they do on this drug.

Thanks
As far as negative side effects, I was just concerned about the risk of cancer, infection, and things like that.
Phil McCracken
05/04/09
Reply
  I have Crohn's and have been on Remicade for 22 months. I go for infusions every 8 weeks. How often you go for an infusion and the dosage foe each infusion is determined by your doctor.
It has personally worked for me and my mother who is currently on it for Crohn's as well.
There hasn't been any negative side effects I've encountered, only positive. I'm feeling better. Things that used to bother me quite a bit before, I can now tolerate. Everyone's different though, I would say after your 1st infusion you should go and eat a quart of yogurt!
What negative side effects hav you heard of?
D
05/04/09
Have any Crohn's Disease patients out there had unpleasant side effects shortly after a Remicade infusion?
My teen-aged daughter has had four Remicade cycles (8 weeks apart) to treat her severe Crohn's Disease. It seems to be working, for now. (Cross your fingers!) She had a treatment two days ago. Today she isn't feeling too well, which always scares me... Have any of you had an unpleasant reaction to Remicade, after not having previously had problems with it? What were your experiences? Thank you.
Elisabeth L
09/13/08
Reply
  I have been taking remicade for 6 years now. While I haven't had any bad side effects, I know of others that do tend to feel run down after it. I would say this is likely a common side effect of the drug that is temporary and should subside within 3 days, at the most. Try to plan things around remicade. If you are taking a vacation, take it the week after remicade to ensure you daughter feels at her best and give the remicade time to adjust to her body.

The general feeling of my doctor is that as long as remicade is working and you are having mild side effects, stick with it. Once you switch off of a drug like remicade, you start to develop anti-bodies to it and then it becomes less effective if you were to go with it again. Only try Humaria if Remicade no longer works.
David S
09/15/08
What is it like to take Remicade, or any medication like it?
I just tried out 6mp but it did not help me so my mother told me the next step would be to try a medicine like remicade or something like it. I was just wondering....
1. How they give it to you
2. Side effects?
3. What should I do when I am getting it done
4. Any additional information

Thanks so much.
Allie B
11/02/08
Reply
  hi allie, I am a female crohn's pt. for 28 yrs. I was on 6MP for many yrs. myself until my white cell count got too low, then I had to stop it.

Remicade is given via an IV usually at a hospital or GI's office. First, they give you Benedryl to prevent any side effects. It will make you sleepy but that is ok. This illness takes alot out of us, so we are entitled to catch up on rest. lol It takes around 7 hrs. or so be sure to bring a book, Ipod, lunch, etc. to keep busy. If you are in the hospital, you can watch tv.

For me it put me in remission for 1 yr. then I flared so I got my 2nd infusion. Then after a yr. again I flared, so #3 was given but that failed due to my body built up a resistance to the mouse antibodies it contains. It varies in each pt. so don't get nervous. The most common Rx for crohnies is 4, 8, 12, week interval infusions. Again, that depends on each pt. Rest assured, they will monitor you very carefully if anything happens. The IV drip is stopped immediately if there are problems.

If you check out the Crohn's & Colitis Foundation of America's site, they have more information on the latest treatments. They also have a live chat, a hotline, and an open forum where you can post questions to others like yourself.

The newer treatments are Humira injections and Entocort (I am on that). For pain mgt. ask for something for stomach spasms like Bentyl. For abdominal pain, ask for Tylenol 3, Darvocet, etc.

Hope this helps. Good luck to you.
common sense
11/02/08
for the past year i ave been on the remicade for colitis or maybe chrones?
not sure which,but biospy came back in favour of colitis.now the remicade dosent seem 2 be working,does anyone know anything about this and whats after this.
rosslass
11/13/08
Reply
  Well I have colitis and I am on Asacol. Remicade probably isn't working because you have colitis. After this you will probably get a colonoscopy if the biopsy wasnt from the colonoscopy. Good luck.
PaisleyMama
11/13/08
Have any of you known of anyone who receives Remicade infusions to develop lymphoma?
Here's my situation and I would appreciate any informed advice or answers about this:

I suffer from a number of health conditions, but I get infusions of Remicade every six weeks for psoriatic arthritis.

Over 3 months ago I became very ill with pneumonia, probably as a result of the immune system taking a hit from the Remicade. Right before I became ill I noted a swollen neck gland and it didn't go away through three rounds of very strong antibiotics.

My family has a high incidence of leukemia and lymphoma history.

I've been scheduled for a CT scan of the lymph node, but I haven't had it done yet. Scared of the results I guess. I've been unusually tired and lack energy, when normally I'm a very energetic person. Yesterday I could tell I am getting sick again, but it doesn't seem to be respiratory. It's a low grade fever that comes and goes and my arthritis has flared up hugely, despite the usual good results I get from the Remicade.

Thoughts?
Elway_the_Cat
04/21/07
Reply
  With Remicade, I know that there is a big question mark around that drug and it's association to cancer.

Lymphoma often produces fever, night sweats, nausea, tiredness and swollen glands. The lymph nodes are really your immune system, that produce your white blood cells to fight off disease and infection.

When your immune system is down considerably you are great risk for serious complications from infections etc. Have you had a white blood cell count? If it's low then your immune system is down. I sure hope it's not lymphoma. It can advance quite rapidly so please don't put off the test. I know because my young son had it. He's fine now as it was caught early and that is what you want to do for the best outcome.

Best of luck.
Eve
04/22/07
After 5 Remicade infusions my mom is having more side effects that are increasing with intensity, have you?
As my mom continues with Remicade she is having more and more side effects and they are increasing with intensity. She communicates these side effects to her doctor but the doctor doesn't seem to think it is a big deal. There are no support groups in my mom's area and she is feeling very confused, scared and alone. Help!
Michelle Ellis
10/11/09
Reply
  Side effects increase as the dose increases. If you think that your mom is not getting the support she needs from her doctor, feel free to go to another doctor. There are online-based support groups for patients taking Remicade and similar medications, she can check it or you can do it for her. The important thing is, despite the discomfort and hardships of being ill and taking the drug, your mom won't feel that she's alone. There are different support groups for specific conditions for which Remicade is being taken for.
SZO
10/12/09
After 5 Remicade infusions my mom is having more side effects that are increasing with intensity, have you?
As my mom continues with Remicade she is having more and more side effects and they are increasing with intensity. She communicates these side effects to her doctor but the doctor doesn't seem to think it is a big deal. There are no support groups in my mom's area and she is feeling very confused, scared and alone. Help!

10/11/09
Reply
  Side effects increase as the dose increases. If you think that your mom is not getting the support she needs from her doctor, feel free to go to another doctor. There are online-based support groups for patients taking Remicade and similar medications, she can check it or you can do it for her. The important thing is, despite the discomfort and hardships of being ill and taking the drug, your mom won't feel that she's alone. There are different support groups for specific conditions for which Remicade is being taken for.
SZO
10/12/09
How do I switch insurance companies while keeping my Remicade treatments covered?
I've been on Remicade for a while with my employer's health insurance plan. I plan on going back to college full time and wish to switch to a new insurance plan. Will this count as a pre-existing condition and will I have to wait 12 months on my new plan until I'm covered? Also, I can continue with my company insurance for up to 15 months after quitting but the premiums are outrageous. Somebody please help!
Adam
05/10/07
Reply
  It depends upon why you are taking the Remicade. Remicade is usually taken for a serious health condition, such as Crohn's disease, Rheumatoid Arthritis or Vasculitis. In this case almost every insurance company will decline to accept you - period.

If it is taken for a minor health condition such as Myositis then there will be a rider placed upon the condition. A rider means they will accept you but will not cover your condition or anything that has to do with the condition, such as medication, for a certain period of time. This rider can last 1 to 2 years or may be a permanent rider.
Zarnev
05/10/07
Has anyone had any success with treating morphea with remicade or any other types of treatments like it?
Has anyone had any success with treating morphea with Remicade,Etanercept or any other types of treatments like it?
tonyspizza232
01/01/08
Reply
  A little bit of success.
heatedwirez
01/04/08
I am terrified about starting Remicade because of the side effects, has anyone had good results?
I have just been diagnosed with Crohn's disease and Ulcerative Colitis about five months ago and have been getting flare ups.
Julia20
02/06/08
Reply
  hi julia, i am a female crohn's survivor like yourself. Did your GI tell you that you have Crohn's colitis? That means the crohn's is causing inflammation in your large colon. It is impossible to have both unless you were dxed as indetermined..meaning that the MD is unable to dx it as crohns or as UC b/c the pathology is very identical.

I had Remicade infusions 3 x. The only side effects I have heard of were trouble breathing and rash. The new protocol now is to premedicate with benydryl to prevent problems plus the RNs will monior your BP every 15 minutes. If at any time you feel funny or are hurting, they stop the infusion right then and there.

The Crohn's & Colitis Foundation of America has a site where you can look up the latest treatments, diet info, surgery, coping skills, as well as locating a support group near you. They also have a live chat & a hotline that is run by healthcare workers well versed in IBD M-F 9 am - 5pm (EST).

Julia, I know that starting any new treatment is scary. I have been there and truly understand what you are going through. Has your GI considered Entocort, 6MP, Humira, or Imuran if you are a candidate.

Feel free to email me w/questions. I've had this for 23 yrs. dxed at age 12. I have learned alot from the drug reps at the CCFA educational meetings as well as other speakers such as dieticians, surgeons, and insurance reps.

I wish you the best of health.
common sense
02/06/08
Is medical marijuana legal in New Jersey?
Im a bit confused about this. I hear it passed, but I have not seen it on the list with the other 13 states. I suffer from crohns disease and I've taken every medicine. I've been on pentasa, 6-mp, prednisone, Lialda, and currently remicade. Nothing seems to be working, but I know marijuana does. Does anybody know If i can legally get marijuana from a doctor now in New Jersey? Thanks
Yanksfan15
07/23/09
Reply
  no. but i wish it was
shawn b
07/24/09

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