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Remicade expense

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Ulcerative Colitis
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Posted 2/17/2016 9:39 PM (GMT -5)
It's been a while since I have been on here, but have always found the site useful. I usually try to stay away when I am doing well as I guess I trick myself to thinking I don't have UC. I have flared periodically the last few years, but since January I have slowly day by day gone in to a full blown flare. Again, back to the tricking myself in thinking this UC stuff is a fragment of my imagination (teasing, fully aware). I do have a scheduled GI appointment 2/22 which really came about at the right time as I wasn't scheduled to go back until October this year. January 2015 was my last colonoscopy and things looked fairly good.

So, this leads me to the subject..Remicade expense. I am certain my GI will talk to me once again about Remicade. The last time he did it was so expensive and insurance would pay minimally if at all! I have had to change medications every few years..Asacol, Colozal and I have been on Lialda the longest. I am scared the Lialda has stopped working. I have seen the whole entire pill in the toilet and have questioned this cry

During my last flare I was prescribed Uceris, which my insurance wouldn't cover-also had the $25 card- and I could not afford $2400 for the script..wow! I was able to purchase the compounded pill script for $300 for the 8 weeks. I will look to that as, in my opinion, prednisone is the devil if we discuss adding a steroid. Yes, I know I am speculating at this point. I need to add back Vitamin D, a Probiotic and a Multivitamin..I know, I know! Don't judge!!

My 2nd concern is the side effects..my husband is so scared of what he has read. He is very supportive, but just doesn't get it. With this flare I have had lots of bleeding, mucus, 8 or more bathroom visits, urgency, spasms and the pain in my entire colon at times is excruciating! Ah!

As far as eating...I have gone as bland as I can for now. When not flaring I know what I can eat and not, or if rather, I will choose to suffer in eating those foods I want to indulge in (drink as well!). I probably would say I didn't change my diet as quick I should have this go round.

Just needed to vent, let it out, whatever..thank you all for stopping in, offering support and/or guidance!
Posted 2/17/2016 9:47 PM (GMT -5)
My mom gets Remicade to treat her RA and she gets help with Remistart. Here's the link
www.remistart.com/
Posted 2/17/2016 10:52 PM (GMT -5)
You are doing yourself a great disservice by trying think you don't have UC. Denial will only make things worse, trust me...been there done that. You need to acknowledge you have a chronic illness. But in regards to the Remicade. If you need it, definitely look in to Remistart.
Posted 2/17/2016 11:23 PM (GMT -5)
I use remistart. They increased their yearly benefit this year to $20,000 with a $5 co-pay. As an example, I'll use my scenario. The hospital bills my insurance $15,000 but their contractural payout is $7000. I'm responsible for 10% until my deductible is paid. Remistart covers the $700 that I'm responsible for which is only needed until my deductible is reached. Remistart only covers remicade, not the additional charges of the infusion center. Those are nominal charges at the hospital I use. I've experienced no side effects from remicade other than a headache during the induction phase.
Posted 2/18/2016 12:03 AM (GMT -5)
Red_34: Obviously, you didn't get the humor..humor is the way I do deal and fits my personality 😊 Within myself, I do take my chronic illness very serious. I see how many others, I know, do not take their illnesses serious and what they go through..I see it daily in my job as well. Self-care and acknowledgement is so very important. Thank you for your comment, though.

Thanks for all posting about remistart. If we discuss Remicade I will look in to it.
Posted 2/18/2016 3:36 AM (GMT -5)
What about immunomodulators (Imuran, 6mp, or aza)? They're often tried before biologics. Unlike biologics, immunomodulators are available in generic form and thus significantly cheaper.

Yes, the literature with biologics or immunomodulators is scary. I think we're all a little nervous when the prospect of using them first comes up, I know I was. What it fails to do is put the risks versus benefits into perspective, and that I found to be very helpful. The benefits, 60+ percent odds of improvement to your uc symptoms. The risks are statistically small for side effects, but serious if they do occur. On the order of 4 in 10,000 (or 0.04 percent) for immunomodulators and 6 in 10,000 (or 0.06 percent) for biologics, compared to 2 in 10,000 ( or 0.02 percent) for the general population. The Crohn's and Colitis Foundation of America is the source for these statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Biologics are all brandname medications and can be costly depending on health insurance (refer to patient assistance programs and insurance fine print). As an example, a 140 pound patient may be initially billed $6,600.00 USD for a 5mg per kilogram dosage every 8 weeks in the USA. Insurance often disallows a portion of that bill, reducing the paid amount due to approximately half that amount: $3,300.00. Remistart pays all but $5 of the medication cost. I am responsible for any part of the IV, saline, or medication administration costs not covered by insurance (about $38 with my policy), very small compared to the full cost of the medication.
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