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05-27-2019 08:26 PM
My niece has crohns....she had an attack yesterday and is miserable. I am aware that everyone is different but have you (if you have this condition) found anything that works well for you. I see that Stelara is a crohns medication, I do not think my niece has taken this drug, any experience?
05-27-2019 08:43 PM
DH has Crohns and has used Remicade for 10 years with great results!
It's an infusion therapy he gets every 8 weeks and it was truly life changing for him!
The manufacturer of Remicade offers a drug assistance program which reduced his previous $350 co-pay per treatment to $5!
05-27-2019 08:46 PM - edited 05-27-2019 08:57 PM
@IG Glad your DH is doing well! My niece is allergic to something in Remicade, she was also on on Immuran (spelling), cannot take that either.
05-27-2019 10:03 PM
@momtodogs I am familiar with biological drugs. I inject Enbrel for an auto immune disease. As far as Chrons, I know that Humira is also for Chrons. I was on Humira for a while and they do have program that you participatein so your drug is FREE. Usually the drug company has a program or a foundation that takes care of the cost. I inject my Enbrel weekly and have been doing so for 9 years.
05-28-2019 02:03 PM
Yes, I've seen those commercials too. I believe Remicade is still the medication of choice when it comes to Crohn's. Of course, every case is different but I see a lot of Crohn's in my work and many do extremely well with Remicade infusions. There are many factors that effect outcome with Crohn's.
05-28-2019 03:32 PM
My niece has been on at least 3 different drugs for Crohns, and has not been able to tolerate any of them. She had an attack, out of nowhere, this weekend. She said her belly always feels bloated, and feels sick to her stomach a lot. I suggested she get a referral to Cleveland Clinic, I am not sure what she will end up doing.
05-29-2019 02:43 PM
How old is she?
I was dx with Crohn's in 1965. I was twenty years old. There was very little knowledge and minimal treatment. I got vicious headaches on sulfalazine and had no response to a massive dose of prednisone. My family and doctors were very frightened.
Good news: I went into a thirty six remission. Two years ago I lost the remission. My gastro had seen some mild activity the year previous when I had a colonoscopy.
He initially put me on Humira. At the three month period I thought I was having side effects and switched me to Entivio. Entivio is a new biologic that only targets the gastrointestinal tract; not the whole immune system. My gastro did start me on Humira because I was very sick (eighteen days in the hospital) and because Entivio is much newer.
I was very fortunate. I am in remission but will stay on Entivio. One half hour on an IV every eight weeks (nurse told me some do every four weeks) is easier than pills for me.
I am a medical writer and did some work for the Crohn's and Colitis Foundation many years ago. Now they have a great website: CCFA.org. She can also call their headquarters in N.Y.City and speak to someone.
They are an amazing organization. If it weren't for them we'd be back in 1965 when they new NOTHING. I was told it was a psych dx and that I had an overly dependent mother.
When I was in the hospital one of my nurses was on Remicade. I met a young man in the drugstore who was on remission on Stelara. They were covered by insurance but there are benefits from most of the pharmaceutical companies for biologics.
The CC was at one time an excellent place for Crohn's. I haven't checked them out in a long time. My dr is retiring soon and I'm checking out the dr who was dr to the late Boston mayor when he got Crohn's. He died of an unrelated cancer.
Please tell your niece you communicated with a woman who had a thirty six remission.
It's a tough disease but there is a lot of help out there.
05-29-2019 03:04 PM
@tzatke thank you for sharing your experience. My niece cannot take a lot of the drugs currently on the market, her doctor told her she was a 'tough case' what ever that means...I try not to interfere to much but I know most days even with out a flair up, she does not feel good, achy joints, bloated belly, etc.
I will pass along your info, thanks so much!
05-29-2019 03:20 PM
One thing I forgot to add. Sensing all the fear coming from family and doctors was not good for me. Having an honest doctor is fine but she needs some reassurance. Hope is a great medicine.
This is a tough disease until one finds the right meds. The reason I asked her age is because there are pediatric gastros who see patients under eighteen.
That bit about my mother was really true. She heard a resident telling me this. She was only about four feet eight and was standing behind him. When she heard him telling me this she did such a job on him he was near tears.
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