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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade insurance approval / Quitting Imuran


06-16-2009, 06:53 PM   #1
My Butt Hurts
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Remicade insurance approval / Quitting Imuran

I quit Imuran today (without doc's approval) because I have read too many times that the non-curable deadly cancer was ONLY found in people who took Remi AND Imuran at the same time.

Coincidence or what? My doc's office called today and said insurance wasn't going to approve my next dose of Remicade because I haven't had an appointment in so long. (wtf) So now I have to go for "a quick" appointment, they said. Now my question is are they going to say "Oh, you are doing so well now - you don't need any more Remicade. Denied." Or if I was NOT doing well would they say I needed more, or they wouldn't approve it because it wasn't working enough?? What the frik are they looking for??

Guess I am going back on Imuran tomorrow in case the Remi doesn't get approved. (In which case I will really rip someone a new one.) And why am I finding this comical??
06-16-2009, 07:02 PM   #2
Procyon
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Oh! That's why my doc took me off of 6MP while I was on the Remicade. Because of that weird cancer. What kind is it again? I was actually thinking of asking my doc if I could go on the 6MP again now that I'm on Cimzia instead. Do you think that the same kind of thing could happen with that combination?

Last edited by Procyon; 06-16-2009 at 07:07 PM.
06-16-2009, 08:44 PM   #3
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kimberlie said:
Wtf???? time for a new doc.
NOOOooooo. I am really happy with my doc. Do you mean cuz he put me on Remi and Imuran at the same time?? Lots of docs do that. They aren't so worried about the possible sides as they are getting well "for the moment". Remember I was reeeeally bad before Humira/Remi.
I quit the Imuran on my own, I didn't ask. He didn't deny me the choice of stopping it, he just doesn't know. (Which apparently is a non-issue now.)
It's not HIM that won't approve the Remi - it's the insurance. I wasn't sure which part you thought I should drop my doc for. I mean - look at me now! He did SOMEthing right!

And HOLY FRIK!! I just read that Remicade is only FDA approved for ONE infusion at this time. They don't mean one infusion AT a time, they mean one infusion EVER! Are you KIDDING ME?? Sorry to yell, but that just seems crazy! Hahahahaaaa - they say that one infusion will usually last 8-12 weeks, but as much as 44 weeks. Now about if it doesn't even kick in fully until your 3rd non-FDA approved infusion??

Procyon - "Some patients with Crohn’s disease or ulcerative colitis who have received REMICADE have developed a rare type of cancer called Hepatosplenic T-cell Lymphoma. Most of these patients were teenage or young adult males. This type of cancer results in death. All of these patients had also received drugs known as azathioprine or 6-mercaptopurine together with REMICADE."
Not sure about Cimzia.
Check here - http://www.cimzia.com/crohnsdisease/...ationGuide.pdf
Page 6 has the section on malignancies. It didn't mention 6mp, but I didn't read all 36 pages.

Last edited by My Butt Hurts; 06-16-2009 at 08:54 PM.
06-17-2009, 11:23 AM   #4
kello82
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whatt? remi is only approved if you get one dose? in your entire life?? holy crap! thats not a widely known fact.....

when we were going thru the battle with insurance to get me approved for tysabri there were 2 things the dr office did that helped a lot. i think it helped at least:

1) my doc wrote a letter of "emergency need" or something like that to the company for me to get the med. basically he just has to stress to them that you NEED this med or you will be very sick.
2) the company was threatened that if i didnt get the drug, i would need to be admitted to the hospital. this persuades them to approve the drug b/c a hospy stay is WAY more expensive, and theyd rather avoid that cost and just fork over for the cheaper option


are you gonna tell your dsoc that you wanna stop the imuran? well if you can stay on the remi i mean...
06-17-2009, 06:23 PM   #5
Procyon
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Your insurance company must not understand how the drug works very well. After you've given them a good talking to, I'm sure they'll understand.

After reading up some, this is some pretty scary stuff. But if it makes you feel any better, you're in a low-risk group. I mean, I don't know how old you are, and I suppose that it's impolite to ask, but if I had to guess, you're in your thirties. And you're female. As of 2007, at least, only one female came down with HSTCL from the remi/thiopurine combo and she was 17. All the rest were mostly teen/twenty-something males. Also, I don't know how many infusions you've had by now, but all of them came down with it by at least their 25th infusion. So if you've passed that mark, then it's even more unlikely.
06-17-2009, 07:18 PM   #6
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Procyon said:
Your insurance company must not understand how the drug works very well. After you've given them a good talking to, I'm sure they'll understand.
Insurance companies AREN'T very understanding in my experience. They denied me a double dose of Humira even when Humira was working well at first. I wrote an appeal letter with about 1287634 reasons why I needed the Humira and my GI spoke to some insurance director or something, but their policy was that I needed to try Remi first.

I think I am only on infusion 6, so I have a loooong way to go before #25.
I am a 19 year old boy though. Surprised you didn't know that
06-17-2009, 07:28 PM   #7
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Well, I'm not TOO worried about it (yet), I just thought it was odd. I got a letter in the mai ltoday saying that I would have an answer within 24 hours of them receiving my chart records from my next appointment. They didn't deny it yet, they just didn't approve it yet. The good news is that I still have 6 weeks until my next infusion in case I have to fight anything, now how long before my GI will get me in? HA! That's ANOTHER good question!
06-17-2009, 09:06 PM   #8
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tell the company that you will have to go in the hospy and cost them millions of dollars if you dont get your meds!
06-17-2009, 09:14 PM   #9
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I did that in my Humira appeal letter. No dice.
06-17-2009, 09:25 PM   #10
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ugh they suck.

send them a cup of your poo?
well since yours is ok right now and wont get bad until youve been off meds for a while, im sure SOMEone on here would be glad to help you out with that and pose their poo as yours. give them the address of the company and send them a cup labeled "MBH's poo"

HAH that is such a gross idea, i apologize.
almost as gross as comfort wipe..
06-18-2009, 01:35 PM   #11
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Mine was all mucosy this morning - where should I send it?!!! YUK!!
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Diagnoses: Crohn's 8/07; steroid-induced diabetes 11/07; Remicade-induced Lupus 02/09, shingles 7/10, and hypothyroidism.
Medications: Entyvio, Methotrexate, prednisone, Protonix, Synthroid, fish oil, calcium, multivitamin, glimepiride. Failed Pentasa, Entocort, Humira, Imuran, 6-MP, Remicade, Tysabri, and LDN.
06-18-2009, 06:34 PM   #12
Procyon
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Make up a story. Tell them that your case is so serious, that famous IBD specialists from Germany have to fly in to study you if you don't get the remicade. And that those doctors require enormous fees, especially because of that fact that if you don't get your remicade, you'll become a candidate for an experimental attempt at a full gastro-intestinal transplant. Do you think they'd actually buy that?

But yeah, grossing them out might work too. Then again, sending people poo or vomit in a box might be against the law...
06-20-2009, 11:52 PM   #13
BWS1982
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Young twenty-something males, yay, I knew I repressed that set of epidemiological statistics for a reason after last reading them.

Last I read, you can get the T-cell lymphoma risk from technically either Aza or Remi/Humira/Cimzia, it's just highest when you do the "combo" therapy. It's simply a horrific (somewhat rare) side effect of long term immunosuppression.
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06-21-2009, 05:28 PM   #14
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I think we should really go "Fight Club" style on Insurance Companies and Banks. The premise was to blow them all up and start over and let people have a chance at not being indebted to these companies.

Or maybe go all John Q style (yet another movie reference). It is absolutely fscking bullsh*t that insurance companies can dictate care.

How dare someone who does not know you beyond medical records be able to determine whether or not you deserve therapy that has been deemed medically necessary by a doctor who does know you.

Those of us in the US have paid into insurance every month of working lives (assuming your company offered insurance) and until we got sick we never needed it. I would say prior to 2007, I visited my doctor once every couple years for check ups and a few colds I couldn't fight off.

Now that I/We need to use a benefit (sad that we call them benefits, they should be RIGHTS as far as I'm concerned, someone thousands of miles away can say NO you can't have it.

The state of health insurance in this country makes me want to leave at times. I love my country and all that it can offer but I could move to Cambodia (I chose that as I have a really good Cambodia Immigrant Friend) and receive any and all care that I need, no need to fight with someone to receive treatment that will save my life or improve my quality of life which we all deserve. It is a fundamental human right.

Sorry MBH, I really hope that things go smoothly and you get what you need. Maybe Hubby will let you marry Jed or someone else in one of those "evil socialist" countries where the health of people actually matters.

[edit]
I have no problem with a company or person being compensated for their hard work and research but it boggles my mind that it seems that only those who are able to afford proper treatment are allowed it. As much as Kanye West (US Rapper) is completely idiotic 99% of the time, in one of his songs called "Roses", he mentions how Magic Johnson doesn't have AIDS yet his Aunt dies because she was simply a secretary for 35 years. The point being those who have money can be "cured" or "taken care of" because money isn't an issue but the "rest of us" are denied care and allowed to die or suffer simply because we choose to live in the middle class or we are poor and don't deserve to receive the top notch treatment afforded to stars, celebrities and athletes. It's a goddamn shame.
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Last edited by drew_wymore; 06-21-2009 at 05:36 PM.
06-21-2009, 07:09 PM   #15
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drew_wymore said:
Sorry MBH, I really hope that things go smoothly and you get what you need. Maybe Hubby will let you marry Jed or someone else in one of those "evil socialist" countries where the health of people actually matters.
YOU plannin' on moving there any time soon?? Then we'll talk!
My appt is July 8th, and they said I would know if I'm approved 24 hours after records are submitted. Next infusion isn't until August 3rd, so at least I have time for an appeal if I need to. Again - I'm not worried yet, it was just surprising to me.
06-25-2009, 12:19 PM   #16
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I got a letter in the mail yesterday saying that I was covered for Remi until October, which will buy me 2 more infusions, then they evaluate again. But DUH! They said they weren't going to give me an answer until they saw my charts from a recent appointment, and I didn't even have the appointment yet! How does that even make sense? Grrr.
06-26-2009, 10:18 AM   #17
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I just talked to my insurance company and this year (2009) since I have already met my out of pocket dedutible my Remicade will only cost $50.00 each time I get them, however they told me my first transfusion next year will cost $2,050.00 to meet my 2010 out of pocket.

I haven't started yet, I get the results of my TB test Monday then will schedule my first transfusion. God I hope this stuff works for me.
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