Humira/ Remicade/Entyvio for Colitis

amother

OP ↓

Mon, Jan 04 2021, 7:00 pm

Anyone can tell me more regarding these medicines for Colitis, risks, side effects. I’m only aware of how they are administered.
I got a bad flare up when I got Corona and dr recommending these. Waiting to see which my insurance approves...
3yrs ago was diagnosed with mild colitis and was on low grade medicine Apriso but apparently that’s no longer working for me.
Really nervous to start these...
Will I be able to ever wean off them with a diet or something.
Any support will be helpful.

anonymrs

Mon, Jan 04 2021, 7:05 pm

Yes, you can not need meds and be healthy and well with diet. Look up breaking the vicious cycle to learn about the specific carbohydrate diet. I can help you with it, if you'd like. I've helped a bunch of people start the diet and Bh they are all very happy they did it.

amother

Black ↓

Mon, Jan 04 2021, 7:07 pm

My DD is on humira for crohns. Our choice was between humira or Remucade.
Ultimately we chose it for convenience. Give it anywhere. Take it anywhere. Easy. Do yourself. Quick. Imagining going to camp or seminary with humira is much easier.
I’ve heard with remicade some insurances will send a nurse to your home which does simplify things.
Her side effects have been minimal. Pain at injection site, rashes we ice first and she showers first and that helps a lot.
She has to go for regular humira antibody testing and blood work.

We were advised there are ways other then meds to heal. But it wasn’t a solution for us.
Our dr said bec the Colon was so bad she could go on a liquid diet for a few months until healed. After they we could try diff diets to see what will work. It wasn’t really a lifestyle for a young girl. Plus statistically almost everyone on a diet had a flare up regularly. For us it was important to heal and get nutrients bec she wasn’t growing and we wanted her body to be in ultimate health when she hit puberty. But there are options other then drugs.

On humira she is bH pain free and growing beautifully. Latest colonoscopy showed a 100% healthy colon bH.

amother

↑ OP

Mon, Jan 04 2021, 7:24 pm

anonymrs wrote:

I think I need to take something for now bec the bleeding is really bad since post colonoscopy last week.

amother

Cobalt

Mon, Jan 04 2021, 7:51 pm

They haven't offered you a steroid option? I forget the name, but that's what I have been offered when my mesalamine doesn't work.

As for diet, colitis doesn't tend to react to dietary changes. I've done a lot of studying since I was diagnosed.

amother

↑ Black

Mon, Jan 04 2021, 7:58 pm

amother [ OP ] wrote:

I think I need to take something for now bec the bleeding is really bad since post colonoscopy last week.

I agree with PP. I look at humira and remucade as long term. A strong steroid may work now.

Also the liquid diet I mentioned can allow the colon to heal drug free. But I’m told it’s hard but doable. (We didn’t do it)

amother

Orange

Mon, Jan 04 2021, 8:03 pm

Specific carbohydrate diet.
Theres a few facebook support groups. (The one I recommend the most because its so incredibly supportive is called "Breaking the vicious cycle scd community". There are plenty, plenty of people on there who have colitis (not only crohns) and have had tremendous healing, in remission.
You can easily start in middle of a bad flare, even with active bleeding. (You can also take a steroid to help with active inflammation now, and begin the diet as you wean off the steroid).

The thing with remicade etc, is that you can definitely wean off it with diet or wtvr, but you may not be able to go back on it in the future if you need to, because sometimes people develop antibodies against the medication when they stop taking it. So its a risk to come off.
Thats why if you can start with diet, its best to.

amother

cornflower

Mon, Jan 04 2021, 8:55 pm

amother [ OP ] wrote:

My close friends with crohns had been on all three.
I don't know why she had to keep switching, it had to do with bad side effects and perhaps inefficiency.
Can't keep up what she's on now Sad

I know it's iv style every few months...

Most important is a very expert dr and being open to switching if needed.