Is It Important to Stay on Humira As Long As Possible?

[JackG]

I've had Crohn's for decades, I'm on Humira, and I'm trying to retire, but the cost of my Humira is stopping me. One GI suggests I stay on it as long as possible and eat the side effects and the prohibitive cost. There's only so many of these biologics, he says, and you might have problems with the others.

Another GI says the skin problems might open me up to other infections and may be signalling rejection. He would move me to Remicade which, coincidentally, is covered by Medicare, allowing me to retire.

I very much need guidance with this decision.

 

[Pilgrim]

There are studies which show some success for people moving from Remi to Humira but I don't know for sure about the other way around.

Would it be possible for you to get financial help from Humira based on your reduced income? I believe they have an assistance program in the US.

I know it would be hard for me to move my daughter to another drug after seeing success with Humira. Once you've been down the bad road, you don't really want to chance it.

Tough call, but I would see if there is an assistance program.

 

[my little penguin]

You can easily move from humira to remicade .
Or from remicAde to humira
But it would run the risk of not being able to use humira again.

My kiddo is only 11. But started remicade at age 8
So he is out of approved options for kids if he ever fails
Humira but there are other non approved options
Cimizia stelera simponi envizo

Good luck with your decisions

 

[JackG]

I guess I'm asking: what's the life span of these biologics? I've seen many accounts here and on other forums where somebody's on Remicade and they have to get off in two years for one reason or another. Somebody else is on Humira and it doesn't work. Cimzia works for one person and not for the next.

Am I burning bridges if I seek a change to Remicade just because its infusion and covered by Medicare? Will most of us blow though these three meds in 10 or 12 years? Are there other meds coming with a realistic chance of helping us?

This is serious stuff; ANY OTHER RETIREES on biologics here? I know there's supposedly aid available, but they all say, "retire and then apply". What? How can I take any assurance on that? Retire and loose my house is more like it!

Just to give younger people nightmares, Medicare Part D only covers so much of these ridiculously expensive biologics. You might have copays of $1000 a month the first quarter, $1200 the second and $1500 the rest of the year. Who the hell can do that after you retire?

To be fair, my daughter and I have been researching for several months and its a labyrinth trying to figure out how to let me retire. And my gastro guy and my second opinion gastro guy differ on my staying on Humira and changing to Remicade.

 

[Pilgrim]

I think you're burning bridges if you change. Your quality of life is very dependant on your health and your finances.

Why don't you retire, apply for aid, and if you can't get the coverage you need, then try Remicade?

Believe me I understand your situation from a different perspective. One income, large family to feed, and if we have to start paying a larger portion we have to start selling large assets (like a car) or take out a 2nd mortgage. Or stop feeding the kids.

I just think it makes sense to see what you can do before you switch.

ETA: I don't think anyone knows the life span of biologics for any one person it seems to be all over the map.

 

[SCCrohnie]

I was on Remicade for seven years and I stopped voluntarily. Had nothing to do with rejection or the drug no longer working for me.

 

[SupportiveMom]

I ditto what pilgrim says. Running out of biologics sucks (look at my signature, I talk from experience). Worst case you pay partially out of pocket for Humira before the switch you to Remicade cause Medicare covers it. But if you can continue with what works, even better!

 

[lenny]

If it were me, I'd switch to Remicade and retire. You will be able to relax more and focus on your health, in retirement. Just my .02

 

[Roxymusic]

Jack, although I just started Humira, it appears to be working for me, and Remicade was working , except I seemed to be burning through it way too fast. Still, I can appreciate the Medicare issue - being 61 I have to make that decision too soon.

I'd have a talk with your Humira Ambassador before switching. If it is working it would be tough for me to switch. But you have to eat something, even if it's Ensure.

 

[JackG]

Boy, roxymusic, maybe we can help each other going into this no-man's land of big money drugs. Wait until you talk to Medicare, or a broker, or Senior Advantage. It's scary, because Medicare has serious limits and of course our biologics blow through those gates pretty quickly.

I've been using my employers group BCBS insurance and that's great. But how to handle the copay for Humira which may be $1000 - $1500 a month (Medicare copay) is a daunting prospect. I'm researching and we'll see. My wife is younger so well have to find insurance for her as well if I retire.

 

[copeland]

Are you in with the Humira Protection Plan?

I'm not sure exactly how it interacts with Medicare, but their discount card took my copay with BCBS down from $2300 to $5.

 

[JackG]

I am currently using that $5 copay plan and it's great. I assumed that it wouldn't transfer to Medicare, but I haven't actually researched it. Meanwhile my GI guy and his nurse both assure me that they have patients on Medicare who get the copay taken care of by Abbvie, the maker of Humira. Whether to jump off this financial cliff trusting them is the issue. I was hoping to encounter more older people on this forum who have experience with Abbvie.

 

[Robrich]

Hi jack
I am on Medicare and biologics. I was on Remicade for 10 years until it stopped working
Switched to Humira but it didn't work. I was approaching medicare and researching the cost and depending on your part d provider. It was 4-5k out of pocket per year. I think Cigna had the best plan. I had been on the Abbie support plan but I understood one wasn't eligible if on medicare.
As the Humira didn't work I moved on to Entyvio an infusion which is covered 100% by part d and supplemental F.
Remicade is a good drug. My guess is it will work if you aren't allergic to the mouse protein.
There's no way to know if Humira will work for you again if you leave it, odds are probably 50/50.
Tough choice but if the side effects get worse it may be made for you
Fwiw its crushing when you've been in remission for years and then your drug doesn't work anymore,but we have no choice except to carry on.
You also may want to put off retirement, once you leave there's usually no going back to a good situation
If it were me I'd probably stick with the Humira as long as I can afford it.

 

[Lisat]

Jackg,
I'm curious about what those skin problems are. I was on remicade for 10 yrs with success until it stopped working. Now they've put me on humira. Just finished my second round of injections. Two observations--severe fatigue for a day and red spots/rash on my face. The redness/rash seems to improve after a few days but. As a single woman, I don't like it! My dr wants me to keep on it; I believe we'll evaluate after 6 weeks. I do feel a little better, can eat more. However, the bleeding has not stopped and that is very upsetting.

I had skin issues while on remicade and now this just seems like more
I will be faced with that retirement issue in 10-13 years and it is scary! My dr wanted me to go on cimzia and my insurer said no, protocol required trying humira first. I can only imagine that is because it's the oldest biologic, thus the cheapest. I am Also employed by the insurance company, so it's been very frustrating. I have a feeling this humira won't last either...

 

[JackG]

Hi Lisat...
I had some skin problems occasionally before Humira, and my primary put me on what must have been steroid creams. Having had Crohns for so long with few problems, my GI started saying gut problems contribute to skin problems. The steroid worked.

Humira really turned it on again, and I have been itching and breaking out all over my body for two and a half years. I went to a young dermatologist complaining about Humira, only to find he prescribes it for skin problems! So it's different for everybody. My GI says eat the side effects and stay on something that works as long as possible.

About retiring, I will post about about my experiences since I'm probably going to go in June. I'm still trying to research and pull information together, and it scares me too. But with Crohn's it will be scary now or in three years.