HELP! Humira and Remicade questions

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 9/3/2008 12:16 PM (GMT -7)   
Ok, so I just found out today that my Medicare "coverage" disqualifies me for Humira Patient Assistance and leaves me with a $4000+ deductable which I cannot even REMOTELY cover. So, yeah. No more Humira for me.

I'm freaking out because:

#1 I was given the loading doses in the hospital last month, and sent home with the booster pack which I administered two weeks later. Does this mean that I am going to have to pay out of pocket for those doses since my insurance doesn't cover this? OHMIGOD. I'm NOT looking forward to getting THAT hospital bill.

#2 I've started the Humira. I don't even know if it's working, or if the Prednisone is just skillfully hiding symptoms. What would be the side effects, if any, of starting this drug and barely even getting my foot in the door - so to speak - before stopping it?

#3 My doc and I felt that the Remicade wasn't working, but I didn't have any "bad" or "adverse" reactions to it. Would it be safe, do you think, to maybe try the Remicade one more time and just hope and pray that I haven't developed antibodies? My last infusion of Remicade was on April 2nd of this year. My last Humira shots were on August 22nd. Should I give the Humira time to get OUT of my system before I try to put the Remicade back IN?

Does anyone have any experiences that might help me here? I'm grasping at straws. shocked
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 9/3/2008 12:27 PM (GMT -7)   
I don't have any answers, but I just wanted to let you know that I'm thinking of you and hope you can resolve your situation without any out-of-pocket expense to you. I know how expensive these drugs are - and to have the insurance reject it after completing loading doses would scare the begeezes out of me too. I can never figure them out -why pay for remicade but not humira?
Please keep us updated,

Bev

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/3/2008 1:49 PM (GMT -7)   
Can you appeal to your insurance for them to cover it? Maybe a letter from your doctor might help. I know I am not much help, just trying to throw some ideas to you. (((HUGS))) and Good Luck!!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


dawn636
Regular Member


Date Joined Aug 2005
Total Posts : 42
   Posted 9/3/2008 4:30 PM (GMT -7)   
I feel horrible that our system is so messed up and you have to suffer for it. I'm due to get medicare in about a year and I'm so scared that's what's going to happen to me. I wonder if they actually think about the things they tell people and how they expect people to come up with that kind of coverage. So frustrating. I am really, really sad you're dealing with such nonsense. I guess you could appeal that decision by Medicare and hope you get to talk to someone with half a brain that can see your problem and cut through the red tape to help you. You are in my prayers, Dawn☼

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/3/2008 4:40 PM (GMT -7)   
Oh, spiders, that's just wrong that you're being put in this position. Medi"care" - what a misleading name.

I've no advice, but lots of hugs and good wishes.

I.
Co-Moderator Crohn's Forum.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/3/2008 5:38 PM (GMT -7)   
Hi What does your Dr. mean you didn't have any bad sie effects from it you ended in the hospital and your bowels are in bad shape. I would definitely say that was a very bad sideeffect. I would get back to your Dr. on that one. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 9/3/2008 7:12 PM (GMT -7)   
Thanks for the responses guys.

I have two options in the works, one is appealing to Medicare, but my initial phone consultation for that process did NOT go well. My part "D" coverage prescription provider said that they won't pay until my out of pocket expenses reach $4050 and I fall under their "catastrophic" coverage clause. Catastrophic - I call this situation pretty darn stinking catastrophic, but my opinion doesn't count for much.

And gail, even though I stopped the Remicade in April - the flare that put me in the hospital was in August - a full 4 months later, and it was partly caused (they think) by the pregnancy and miscarriage that I went through last month. So, I didn't have an "allergic" or "antibody" reaction to my April treatment - it just didn't help my symptoms much so we stopped... and then I got pregnant to boot, but everything went fine for the first 9 weeks or so of the pregnancy before everything hit the fan... that's what I meant by no bad side effects directly from the Remicade.

On a more hopeful note: The Patient Access Network Foundation that was kind enough to pay for my Remicade last year is MAYBE going to consider switching that assistance over to Humira. The lady at PANF said that she would fax the letter to my Doc that just required him to state that my treatment has switched and that Humira is now the drug that I need help with. I'm not holding my breath, but I may have found a way to keep getting the Humira. Regardless, anyone reading this that is having trouble getting or paying for their crohn's meds - ANY crohn's meds - you have a possible night in shining armor in the Patient Access Network Foundation. Their website is easy to find if you want to check it out. I'm tempted to make a separate post so that people will see this part... Oh, and PANF is completely SEPARATE from all the drug companies - so, even though I didn't qualify for Remicade through Centicore, or Humira through Abbot, this foundation is STILL AN OPTION. Maybe it can help others.
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 7:23 PM (GMT -7)
There are a total of 2,732,816 posts in 301,057 threads.
View Active Threads


Who's Online
This forum has 151209 registered members. Please welcome our newest member, Old Editor.
335 Guest(s), 18 Registered Member(s) are currently online.  Details
Wdan, Psilociraptor, Rikky1, Tick41, Pratoman, Lynnwood, Alice22, JS44, ks1905, Ed Ski, lynn421, Red_34, Ggrlsav, The king, Old Editor, Sue*Nash, Sissy63, Peter A


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer