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Next stop, Humira?

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Ulcerative Colitis
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Posted 5/28/2018 4:16 PM (GMT 0)
Hi all,

I’m new here and 9 mos. into my 5th flare. This one’s a doozy. My mornings are getting eaten up by sitting on the toilet, laying down with cramps, or sitting on ice to relieve my hemmies. I’ve tried lots of meds, but have resisted biologists because of how they might affect immune system. Tuesday I will be approved to start Humira and I’m freaking out. I’m afraid of injecting myself, getting bronchitis (I’m prone), but mostly, that it won’t work.

It’s hard not to get depressed. Is there light at the end of this tunnel?

Thanks for being here.

DX 2007 at age 46. This is 5th flare, 9 mos. going strong. Recent colonoscopy showed 11 cm of ulceration in rectum. On Mesalamine 1.2 gm/4x day. Tried uceris (worse) Colocort enema (couldn’t retain), prednisone (sicker). Also on liothyronine for mild hypothyroid, losartan potassium for bp. Tried probiotics (worse) and am sticking w SCD. Meditate, tap (EFT) and any other darn thing that might work.

Post Edited (marmcmar) : 5/28/2018 10:42:56 AM (GMT-6)

Posted 5/28/2018 5:29 PM (GMT 0)
Hello

I know you are having a hard time retaining enemas but I found that Rowasa helped more than steroid enemas. I just had to cancel an amazing vacation because Uceris made me worse and now I'm back on prednisone. Forget about the worry of the biologics- be more worried that it does not work. When I started Humira I was so worried about the side effects when it was working then when it wasn't working I was more worried about that.. Humira's side effects for me were tiredness for a few days after my shot and then insomnia the week I didn't get the shot. Otherwise it is not entirely working for me so I'm switching to Remicaid. There are some on here that will tell you that you should also start an immunomodulator with a biologic which further suppresses the immune system. 11 cm of ulceration is not too bad and hopefully Humira and maybe Rowasa will knock it out. They say people go on to live normal lives with the disease but I don't know what normal is anymore. Be positive about going on a biologic earlier on in your disease so that you can be a better statistic as far as longer remission. I feel confident that you will find something to control the 11 cm of rectal inflammation.
Posted 5/28/2018 5:39 PM (GMT 0)
Thank you, Countess. I’ve never heard of Rowasa. I will look into that. My symptoms have gotten much worse since that colonoscopy 6 mos ago, so I hope it has not spread. Is there any way to gauge that other than a colonoscopy?

Have you found diet to affect your condition? I’m on SCD and find if I ever off even slightly I get really sick.
Posted 5/28/2018 5:43 PM (GMT 0)
Just checked — Rowasa same as mesalamine, which I’m on.
Posted 5/28/2018 6:20 PM (GMT 0)
I meant Rowasa enema not pill form. It worked better than the steroid enema for me. Are you using a mesalamine enema?
Posted 5/28/2018 6:36 PM (GMT 0)
Oh, right. No, not using mesalamine enema. I will ask doc about it tomorrow. Thanks.
Posted 5/28/2018 7:25 PM (GMT 0)
Since your disease is low- you could get a sigmoidoscope to re- evaluate. You for sure need rectal medications. Canasa is a suppository that is also a mesalamine that is for the rectum. You could do 1 canasa in the AM and Rowasa in the PM. I tried the SCD but I am really not sure if it helped because I struggled with the Almond flour and some of the vegetables. Some will argue that resistant starch is good for proctitis but if you are getting results from SCD then good. I tried a variety of natural treatments esp. early on but the disease kept coming back despite the meds so I had to move on to Humira. With proctitis you will not win without rectal meds I can assure you that!!
Posted 5/28/2018 8:17 PM (GMT 0)
Thank you. Call to the doc in the morning.
Posted 5/29/2018 4:04 PM (GMT 0)
I'd go on the humira. You're 9-months into this flare, how much longer are you willing to wait in order to get better? Humira works fast, in 6 weeks or less. Have you seen the humira pen? It's not at all intimidating. A nurse will show you how to use it.

Remicade saved me after a similar length flare. Very similar to humira. I've been on remicade since 2012 without side effects from it.
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