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Crohn's Disease Forum » Parents of Kids with IBD » To do Remicade or not


07-31-2010, 01:24 PM   #1
my4mack
 
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To do Remicade or not

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.
07-31-2010, 01:55 PM   #2
Dexky
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Geez My4, I wish I knew what to say..Remicade has been mentioned for my son as well but we haven't had to explore that yet as he is doing so well on the 6mp he's on. We haven't had to deal with any fistulas though. MisB has given some good advice before about finding financial aid and such. You might search her posts and find some help there. She's not feeling well right now but I'm sure she'd be happy to help when she's better.

I hope someone can give you some solid advice. If the docs thought it was the only thing that would help, I guess I'd use the remistart and then just deal with the consequences as they arose. It's an agonizing decision and one no parent should have to make. I'm sorry for you. Good luck!!
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07-31-2010, 04:58 PM   #3
DustyKat
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Whoa, that's a lot to deal with!

I won't be much help, sorry, as I live in Australia. My thoughts though as far as starting the Remicade. So the doctor has indicated it's the best thing, so if by saying that he means it's not the only thing then maybe you can wait it out a bit. If he is on the the best alternate treatment and he is feeling great with little symptoms perhaps stick with that for now.

If he gets into the air force does that mean his medical costs are taken care of?

If so, could you use the remistart program to get him to the point of being symptom free and then hopefully get into the AF and then go from there. It that your son's intention by wanting to go on it now?

I'm sorry I can't be of any help to you and have asked more questions than I have answered.

I wish you the best and hope you find the answers and guidance you need.

Take care,
Dusty
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07-31-2010, 07:50 PM   #4
sarabethmo
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I was on Remicade infusions for about a year. It did seem to help and keep my flares down and symptoms as well. But after a while I started having liver problems from the Remicade. Other side effects came later, minor ones. So my doctor decided Humira injections would be a good alternative. I give myself an injection every 2 weeks and it seems to do the sme thing. But I have to be honest and say I was hospitalized once on both medications for sever flares. I still take Humira because it lessens my symptoms and is suppose to help me with my skin condition. But over the past 13 years I have found no wonder drug for me, but some people swear by Humira. Every case is different. I am afraid all you can do is try and see what works best for your son. Trial and error seems to be the only sure way to find some kind of relief.
07-31-2010, 11:19 PM   #5
fateful_one
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ahhh, crohn's is so overwhelming isn't it!

if ur son is responding to the meds he is on now, you may want to hold off on starting remicade because it is true that once u start, u must not stop taking it! if u do stop taking it, the body will build up anti-bodies. remicade will then become ineffective, and may cause a severe allergic reaction. (i know about the latter because it happened to me. i can no longer take the drug.)

i am in the usa and have been able to keep my insurance thru an employer. my insurance always covered 90% of my remicade treatments after my deductible was met. even w/ this coverage i still have a lot of outstanding bills though. however, i have had many bills (about 75%) written off or forgiven through charity assistance (including my er visits, hospitalizations, etc.) because i make so little money (less and 20K a yr). maybe ur son will qualify for this once he is no longer a minor? i am 29, and after 5 yrs of crohn's, i can honestly tell u that most, if not all of my xtra money goes towards med bills and prescriptions i live at home w/ parents too.

i hope this helps, good luck to u
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08-01-2010, 02:32 AM   #6
Dallies
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I'm sorry I can't answer your questions as I'm from the UK - however I hope that you get some answers very soon. Your son sounds like a fine young man with ambition and drive and you must be very proud of him. Thinking of you xxx
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08-01-2010, 02:09 PM   #7
My Butt Hurts
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M4M -
Welcom to the forum, first of all. Sorry you have to be here, but it's a great place for support and information.
I think I'm a little confused. He DOES have insurance? Have you actually asked them how much your copay will be for Remicade? I wouldn't think that it should be thousands of dollars if you indeed have insurance. My treatments are around $5,000 at the hospital, but my copay is only $40 every 8 weeks.

Also, if he does have insurance right now, he should be able to switch to his own insurance when needed without the pre-existing condition being a problem. It's when the insurance coverage lapses that they can stick it to you. I have switched twice since being diagnosed.

I would guess that if he was to start Remicade right now, he wouldn't still be on it in his 40's. Remicade tends to start wearing off after a while, and losing effectiveness. The longest that I remember reading about on here is someone that was on it for 7 years. I have been on Remi for almost 2 years and I am feeling amazingly well. I am sure that it will wear off sooner or later, but new meds are being tested all the time.

Where is his fistula located? I wasn't under the impression that fistulas bled. Maybe it was something else that caused the recent bleeding like a hemerhoid (sp)? (Oooor maybe they do and I've just not heard of that.)

I can imagine it is a super tough decision now that he is feeling better, but I do believe that my being on prednisone when I started Remicade helped it to kick in so well. Prednisone can trick you into thinking that you are better healed internally than you really are.

I have read that Remicade in combination with Imuran in adoloscent boys has an increased risk for blood cancer (not to scare you, but just to let you see another side of it), but he is not on Imuran at the moment. I for sure would not want to combine them.

Good luck with all of your decisions. I'm glad that you found us.
08-01-2010, 04:50 PM   #8
Lisa
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I would definitely look into the cost fo rthe Remicade - that 13k is HIGH!!!!!.....My visit bills out at around 5000 for the treatment- including all the stuff that goes with it - if you do want to have the first infustion(s) at the more expensive hospital - ask AHEAD what the breakdown will be for charges - and see where they are gouging you/insurance.....

As for co-pays - my insurance (Blue Cross/Empire Plan) gets the bills as 'chemotherapy' - with NO so-pay....I had to check with my insurance, because some times I do get billed a co-pay, but then it is only as a prescription drug....which is what this is!.....

As for should you or should you not have him start....honestly if it was me, I'd wait, especially if the fistula is not causing problems - I had fistulas that were really affecting me, so decided on the remicade route - and they almost immediately cleared up.....I have been on it now for just about 5 years.
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08-05-2010, 06:42 PM   #9
my4mack
 
Join Date: Jul 2010
I found out that the Remistart program can be extended indefinitely. You submit your W2s and if you have insurance and don't make more than $104,00 for a family of 4 that you could continue to have some of your copay - paid for. I still haven't heard back from the hospital with the infusion suite where our son is supposed to go to start the remicade....

Also, he is feeling so much better with the prednisone, down to 10 mg twice a day and the Asacol. He has gained weight back in all the right places and is feeling good. Hasn't had any drainage from the fistula for over 2 weeks, and then it was only a few drops of blood (he thought). Also, he has a retired Dr. / mentor / friend. He cautioned our son against starting the Remicade until he would REALLY need it. He said it messes up your system and can cause some potentially serious long term problems with your immune system and your body's own natural ability to heal itself. So now I'm not sure what we are going to do....
08-06-2010, 07:26 AM   #10
DustyKat
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Hi,

Sorry, I can't help out with advice about the Remicade but if you haven't already done so you may like to browse through the Remicade Club thread:

http://www.crohnsforum.com/showthread.php?t=4544

Was the doctor friend a GI or someone who dealt with other types of autoimmune diseases?

Dusty.
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