topic Re: Stelara....for Crohns in Wellness

Stelara....for Crohns

Mom2Dogs — Tue, 28 May 2019 00:26:00 GMT

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?

Re: Stelara....for Crohns

KingstonsMom — Tue, 28 May 2019 00:43:33 GMT

@Mom2Dogs

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!

Re: Stelara....for Crohns

Mom2Dogs — Tue, 28 May 2019 00:57:00 GMT

@KingstonsMom 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.

edited

Re: Stelara....for Crohns

Katcat1 — Tue, 28 May 2019 02:03:05 GMT

@Mom2Dogs 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.

Re: Stelara....for Crohns

chrystaltree — Tue, 28 May 2019 18:03:01 GMT

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.

Re: Stelara....for Crohns

Mom2Dogs — Tue, 28 May 2019 19:32:32 GMT

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.

Re: Stelara....for Crohns

Mindy D — Wed, 29 May 2019 18:16:01 GMT

There’s also Humira.

Re: Stelara....for Crohns

lavendar — Wed, 29 May 2019 18:43:51 GMT

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.

Re: Stelara....for Crohns

Mom2Dogs — Wed, 29 May 2019 19:04:42 GMT

@lavendar 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!

Re: Stelara....for Crohns

lavendar — Wed, 29 May 2019 19:20:37 GMT

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.

Re: Stelara....for Crohns

Mom2Dogs — Wed, 29 May 2019 20:44:37 GMT

@lavendar ....good for your mom...my niece is 40 years old, (her mom is not in the picture, she looks to me as her mother figure)....she has been dealing wtih this for 20+ years. I just feel so bad for her, and between work, children, life, going to Cleveland Clinic is hard but I told her she needs to put herself first....but again I try not to say to much...she knows I have her back.

Re: Stelara....for Crohns

lavendar — Wed, 29 May 2019 21:09:43 GMT

Bravo for being her substitute mother. I have a similar relationship with my niece.

Work and children are two full time jobs. Let her know she's doing very well on that front for someone with a chronic illness. If there's any way she could lighten her load it could help. I know that is not always possible.

She can call the CCFA office and get a no. for the local office near her. She can ask for a physician to see but this isn't always the best route. The offices may only have names of volunteer physicians.

I found the best way is to go to a support group meeting and find out who the other people there are seeing. Even online might help.

Re: Stelara....for Crohns

Mom2Dogs — Wed, 29 May 2019 23:34:22 GMT

@lavendar ...one question..is it 'normal' or maybe should say a symptom....to have body aches and stiffness with Crohns? She mentions those symptoms but the reading I have done, I do not recall that being mentioned.

Re: Stelara....for Crohns

Nataliesgramma — Wed, 29 May 2019 23:41:14 GMT

@Mom2Dogs wrote:
@lavendar ...one question..is it 'normal' or maybe should say a symptom....to have body aches and stiffness with Crohns? She mentions those symptoms but the reading I have done, I do not recall that being mentioned.

Yes...My daughter has had Crohns for 10 years and that is normal

I would recommend the Cleveland Clinic for her. They know what they are doing up there and people come from long distances to be treated for Crohns....I can't ell you how much they helped my daughter.

Re: Stelara....for Crohns

Mom2Dogs — Thu, 30 May 2019 01:29:58 GMT

@Nataliesgramma , thank you so much for the reply....I have suggested to her to go go Cleveland Clinic it is only about 3 hours from her home, it's just getting there, again thanks!

Re: Stelara....for Crohns

lavendar — Thu, 30 May 2019 03:27:42 GMT

Good to know about CC. There are many gastros there; find one who specializes in Crohn's.

Body aches, especially in the joints is seen. There are many extraintestinal symptoms. I saw a rhematologist and an opthamologist even when I was in remission. That would be an advantage of a place like the CC: she could be seen by specialists for her other problems .

The year after I lost my remission I had severe fatigue. This is common also.