Hi,
We have several in our family with Crohns, and our son was diagnosed about a half a year ago. He's 17, has a perianal fistula and was down to 126 pounds. But lately, the last two months, he has felt a lot better and has put on about 10 healthy pounds. He WAS taking Omeprazol, Pentasa and Metronidazol. He looks better and feels better and has a lot more energy. He has been taking Reliv nutritional supplements (doctor said they were okay) and to our son's delight - he is getting muscle back on his arms and chest, and has more energy and no more nausea! Yay!
His new doctor said Remicade would be the best thing to put him in remission to get rid of the fistula. He had him stop the Pentasa and Omeprazol and doubled the Metronidazol. He also put him on a high dose of Prednisone and is gradually tapering off on that and then added Asacol. Our son says he's feeling great! The fistula has only "bled" once in the last month and a half when he strained with a bowel movement. No pus, just a drop or two of blood.
Several questions I need to ask. If he's feeling better and looking better, does he still need Remicade? I am terrified about the costs and long term use of Remicade for him. The PER TREATMENT bill at the big hospital with the Infusion Suite is estimated at up to $13,000, and he would have to have them at 0 weeks, 2 weeks, 4 weeks and then every 2 months for the rest of his life! Our local hospital said their bill would be $5,100 per treatment but said he should probably get his initial treatments where his GI Dr. is located.
I have applied for Remistart for him and was relieved to hear it would help with costs the first year. But what about after that? I heard once you're on Remicade you're supposed to be on it for life, unless you have complications from it. How do you pay your bills if you have $1000-2500 medical bills every treatment (20% copay). And the way I figure it, what will my son do when he is in his 40's or 50's and he has used over $1,000,000 lifetime maximum in benefits (considering he still has Blue Cross). I imagine he won't be able to get on a new policy that covers pre-existing conditions for the rest of his life.
We make too much money (about $70,000) to qualify for medicaid or any other help and we have 2 in college, soon to be 3. Do we NEED to have our son go on Remicade if he's feeling okay, looking better and gaining weight? He would like to go on Remicade temporarily if it puts him in remission and heals the fistula and then get on with life. He wanted to go in the Air Force and study to be a Doctor. (He still wants be a General Practice Dr. and Surgeon.) His Crohns GI said if we get him in remission with Remicade, we could possibly time the Remicade treatments so he would take one right before entering basic training and one as he gets out and possibly be off of all meds. He really wants to be a Doctor and has the grades and drive to do it. The AF recruiter said if he could be "drug free" and symptom free he could maybe get a waiver.
For those of you in the US - How do you afford the Remicade treatments after the Remistart runs out? Can he just take it for a year or so until he's in remission and then quit and take it again only if he needs to later on in life? Or does this drug make you become "addicted" to it?
Thanks for reading and any advice is appreciated.
We have several in our family with Crohns, and our son was diagnosed about a half a year ago. He's 17, has a perianal fistula and was down to 126 pounds. But lately, the last two months, he has felt a lot better and has put on about 10 healthy pounds. He WAS taking Omeprazol, Pentasa and Metronidazol. He looks better and feels better and has a lot more energy. He has been taking Reliv nutritional supplements (doctor said they were okay) and to our son's delight - he is getting muscle back on his arms and chest, and has more energy and no more nausea! Yay!
His new doctor said Remicade would be the best thing to put him in remission to get rid of the fistula. He had him stop the Pentasa and Omeprazol and doubled the Metronidazol. He also put him on a high dose of Prednisone and is gradually tapering off on that and then added Asacol. Our son says he's feeling great! The fistula has only "bled" once in the last month and a half when he strained with a bowel movement. No pus, just a drop or two of blood.
Several questions I need to ask. If he's feeling better and looking better, does he still need Remicade? I am terrified about the costs and long term use of Remicade for him. The PER TREATMENT bill at the big hospital with the Infusion Suite is estimated at up to $13,000, and he would have to have them at 0 weeks, 2 weeks, 4 weeks and then every 2 months for the rest of his life! Our local hospital said their bill would be $5,100 per treatment but said he should probably get his initial treatments where his GI Dr. is located.
I have applied for Remistart for him and was relieved to hear it would help with costs the first year. But what about after that? I heard once you're on Remicade you're supposed to be on it for life, unless you have complications from it. How do you pay your bills if you have $1000-2500 medical bills every treatment (20% copay). And the way I figure it, what will my son do when he is in his 40's or 50's and he has used over $1,000,000 lifetime maximum in benefits (considering he still has Blue Cross). I imagine he won't be able to get on a new policy that covers pre-existing conditions for the rest of his life.
We make too much money (about $70,000) to qualify for medicaid or any other help and we have 2 in college, soon to be 3. Do we NEED to have our son go on Remicade if he's feeling okay, looking better and gaining weight? He would like to go on Remicade temporarily if it puts him in remission and heals the fistula and then get on with life. He wanted to go in the Air Force and study to be a Doctor. (He still wants be a General Practice Dr. and Surgeon.) His Crohns GI said if we get him in remission with Remicade, we could possibly time the Remicade treatments so he would take one right before entering basic training and one as he gets out and possibly be off of all meds. He really wants to be a Doctor and has the grades and drive to do it. The AF recruiter said if he could be "drug free" and symptom free he could maybe get a waiver.
For those of you in the US - How do you afford the Remicade treatments after the Remistart runs out? Can he just take it for a year or so until he's in remission and then quit and take it again only if he needs to later on in life? Or does this drug make you become "addicted" to it?
Thanks for reading and any advice is appreciated.
i live at home w/ parents too. 
