Crohns for 34 Years

[JackG]

I've had Crohns since 1981. Not many local docs knew about it then and I went undiagnosed for 6 months, all the while with fevers and diarrhea. Luckily I wound up at the University of Chicago weighing 90 lbs, with an emergency abscess and subsequent ileostomy & reconnect. Since then I've been fortunate on Azulfidine and Pentasa.

After so long, I had two strictures at my surgical site in the last 5 years, and both were almost surgeries. Docs pumped me out, calmed me down with Prednizone, & discussed options.

As a result I have been on Humira for 2 and 1/2 years and I have eczema all over. The itch feels like it's deeper than just skin. My hands get scaly patches and the skin splits. For the eczema I'm on Atarax for overnight and an anti fungal cream (triamcinolone acetonide 0.1%). After many meds, lotions and blind alleys, that combination seems to work.

I want to retire, but Humira is gougingly expensive ($6500 a month). It blows through Medicare's Part D catastrophic level, and my copay could be as much as $8500 a year. There are financial aids available,but they are not guaranteed and as more and more people get on Humira, will the financial aid last?

My GI doc says U of C highly recommends staying on Humira and putting up with the eczema for as long as possible. But I got a second opinion from another GI: he says the eczema could lead to other infections and he would put me on Remicade instead. And Remicade being an infusion done at the hospital, would be covered by Medicare!

So which do I believe? What are the dangers involved with switching? What if Remicade doesn't work with me? Am I permanently away from Humira?

 

[nogutsnoglory]

The danger of switching is that remicade being similar to humira could also create eczema but not necessarily since even similar drugs work differently per individual.

The bigger issue is that once you stop humira you may develop antibodies to it and be unable to resume it. There are other options too such as Cimzia and Stelara and Entyvio which are all powerful drugs

Given your financial burden and the side effect it seems worth trying remicade.

 

[Crohns08]

Have you tried getting the manufacturer's card? When I was on Humira we got that card and the copay was only like $5 a month.

 

[JackG]

Yes, I've have had that card from the start, and I'm still under my employers group insurance. I haven't looked into what that card would mean under Medicare, but I will. Thanks for the idea.

 

[Clash]

I don't think the card can be used with medicare or Medicaid/any fully govt funded insurance. I know that is the case with remistart, the non financially based assistance program, that is used with remicade.

But my mom is on remicade for RA and for her, you are right, Medicare covers it. She was interested in humira but her doc told her that falls under the prescription coverage and so there is more out of pocket expenses.

 

[Justanothercp]

This is great information. I am on Remicade and my doctor has talked to me about switching to humira because it's "more convenient", but I've been reluctant since Remicade seems to be working. Now hearing about the cost due to classification, I will definatly not switch. I appreciated the information. Better to learn now than after switching!!