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Help for my son with colitis

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Ulcerative Colitis
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Posted 7/28/2017 12:53 AM (GMT 0)
He is currently taking infusions (remicade) which seems to be controlling his flare-ups. My concerns are the possibility of unknown long term effects of the remicade, and the medical bills from the transfusions are over 10k now and my family is not well to do. Has anyone here had any success with an Asian herbal remedy for a active 17 year old, or any other suggestions. Remicade helps his bowel movements but he always seems to have a bit of a cold and aches. Thanks so much for any advice, or personal stories you can provide us.
Posted 7/28/2017 2:26 AM (GMT 0)
sorry you and son are having to deal with this - can you give us more information as to when he was first diagnosed, what was the diagnosis, what meds he has tried, and any other pertinent information -
Posted 7/28/2017 4:10 AM (GMT 0)
He started having excessive bowel movements with mucus and blood 14 months ago. Had a colonoscopy and diagnosed with UC. Started on appriso and then prednisone. Lack of results led dr. To recommend infusions (remicade) 2 weeks..then 4.. Then 8 which he has done twice now. Not sure if I can add anything else. Remicade helped with UC but he is not the same person on it. Was a state high school swimmer but now doesn't want to continue. Has runny nose constantly, walks like a much older person, coughs at night, bad dreams, tired/depressed. Thanks for listening. Not sure if that covers it?
Posted 7/28/2017 4:19 AM (GMT 0)
He is still taking appriso along with infusions (remicade) but not the prednisone.
Posted 7/28/2017 4:23 AM (GMT 0)
Are you in the US? If so, you should have access to Remistart, a program that makes it so you only pay $5 an infusion.
Posted 7/28/2017 4:56 AM (GMT 0)
Noodles...what? I'm going to look into that right after I throw up!
Posted 7/28/2017 5:23 AM (GMT 0)
Are you on government subsidized health insurance (such as VA or Medicaid)? If not, you should be eligible.

I'm surprised your doctor/infusion center did not mention it to you. My infusion center has every single Remicade patient sign up for it.
Posted 7/28/2017 5:30 AM (GMT 0)
I am self employed and got insurance thru the national healthcare program. I will call the dr. In the morning to see if there is anything I can do, although I am more concerned about the long term effects of remicade. I need to try and find a better way.
Posted 7/28/2017 6:44 AM (GMT 0)
Remicade has been around for about 20 years now, so that's the extent of long-term data on it. The short-term effects your son is dealing with are more important if you ask me. They may be from the Remicade, but they could also be from the UC itself or from tapering down off of prednisone.

How much pred was he on and for how long? How did he taper off of it?
Posted 7/28/2017 10:07 AM (GMT 0)
If your son is doing well on remicade and its controlling his UC symptoms then he should continue taking it. The longterm affect of having uncontrolled UC inflammation is much worse (increased colorectal cancer odds, poor quality of life, etc.). There's lots of unknowns and uncertainties about the future, but stick with what is working. Upend your whole apple cart, and who knows if you'll find another solution that'd work as well, it'd be one heck of a gamble.

Having UC changes us all regardless of what medications we take. UC causes anxiety and extra stress, depression, and other issues in many of us. Living with a crohnic illness isn't easy to cope with even for the strongest of us. It's very easy to find scapegoats and place blame where it isn't due when you're looking in from the outside !
Posted 7/28/2017 3:27 PM (GMT 0)

Christoph said...
He is currently taking infusions (remicade) which seems to be controlling his flare-ups. My concerns are the possibility of unknown long term effects of the remicade, and the medical bills from the transfusions are over 10k now and my family is not well to do. Has anyone here had any success with an Asian herbal remedy for a active 17 year old, or any other suggestions. Remicade helps his bowel movements but he always seems to have a bit of a cold and aches. Thanks so much for any advice, or personal stories you can provide us.

Are you trying TCM or Ayurveda?
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