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Is anyone here able to afford their GI drugs anymore?

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Crohn's Disease
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Posted 2/13/2017 3:25 PM (GMT 0)
If so, how? All my meds (Entocort EC, Delzicol, Asacol and even Rowasa!) have all gone from tier2 to tier5 and even NOT covered on my insurance. I'm looking at $10,000+ OOP for all my maintenance GI RXs this year! How is everyone else on here getting by?

mad
Posted 2/13/2017 5:49 PM (GMT 0)
Nope I don't bother. Thanks to Obamascare.
Posted 2/13/2017 6:10 PM (GMT 0)
so you don't take any maintenance meds (anymore)?
Posted 2/13/2017 6:15 PM (GMT 0)
Nope. I have a stash of pentasa at home. I need a colonoscopy but have not done it as the deductible and hospital charge with my Kaiser insurance that we pay $900 per month for my husband and I, would come to over $3000. For a colonoscopy? Give me a break. My blood and stool tests that are a copay of $300+ showed more inflammation but I already know that as I have constant crohn's flares.
Posted 2/14/2017 2:54 AM (GMT 0)
I just found out how quirky my copay is. One month of Canasa cost me a $200 copay and Lialda cost me $157. If I order a 3 month supply my copay for each med is a total of $80 (about $27 per month). How crazy is that? Obviously I will be ordering three month supplies from now on.
Posted 2/14/2017 3:24 AM (GMT 0)
Broken Record alert!

Why are any of you taking mesalamines if you have Crohn's?

I wouldn't take them if they were free. And I sure wouldn't pay for them.

If you feel that you must be on them for some reason, find which one(s) is/are on your formulary. They're all equally (in)effective for Crohn's.
Posted 2/14/2017 11:21 AM (GMT 0)
He's at it again. Beave back to hes best.

Post Edited (whatdoigotDOC!) : 2/14/2017 4:24:31 AM (GMT-7)

Posted 2/14/2017 11:23 AM (GMT 0)
https://www.drugs.com/comments/mesalamine/pentasa-for-crohn-s-disease-maintenance.html

Here you go beave. From real people not these so called tests that nobody knows about.
Posted 2/14/2017 11:29 AM (GMT 0)
So all these people are lying Yeah mate? Stop trying to be a doctor and keep telling these people what YOU think.
Posted 2/14/2017 11:33 AM (GMT 0)

whatdoigotDOC! said...
Here you go beave. From real people not these so called tests that nobody knows about.

These "tests" are called clinical trials, involve thousands of people and are rigorously controlled.

"Real" people opinions are vastly overrated. It was real people who voted in Trump and voted for Brexit. Yeah sure, it's important that individual doctors listen to individual patients, but en masse I feel completely comfortable ignoring their opinions.

In short for *most* people with Crohn's taking Pentasa is throwing good money away. I can't think of a single person on this board whom Pentasa has helped in the long run. Basically even people with so-called mild disease have ended up needing to have a resection eventually.

Edit: I may have got a bit political here. Whoops wink

Post Edited (NiceCupOfTea) : 2/14/2017 4:36:39 AM (GMT-7)

Posted 2/14/2017 11:47 AM (GMT 0)
And you can say the same thing about immunosuppressents, biological and prednisone. I know people on them and still needed surgery. I know people on them and had really bad reactions.

My point is beave shouldn't be knocking people like that, he does it over and over again.

Funny how you said "real" people's are vastly overrated i rather listen to the "real" person then some trail i know nothing about. I rather listen to a person thats been taking a medicine for years and years than some trial.

You dont agree?

Just cause it doesn't work for someone, doesn't mean it won't work for another. Colifoam doesn't work really well for me but salofalk works like magic and guess what salofalk is a mesalazine.
Posted 2/14/2017 12:52 PM (GMT 0)
Beave isn't knocking people, he's knocking mesalazines and has done so for years on this board. You're taking it too personally.

Yes, other meds don't always work. I know, I'm on practically the last biologic left for me to try. If I went solely by my own experiences, I'd tell everyone not to take Remicade. Luckily I don't go solely by my own experience.

No, I don't agree. "Real" people often don't know what they are talking about. Clinical trials involve thousands of people and are carried out under controlled circumstances. They're not perfect but they are lot better at showing whether a particular medication works or not than person x's or person y's opinions.

Now in your case you've got an indeterminate case that's somwhere in between Crohn's colitis and UC so, yeah, I'm not surprised that mesalazine works for you. I believe you. That doesn't mean that meslazine is a good choice for classic Crohn's disease.
Posted 2/14/2017 1:02 PM (GMT 0)
Why would you tell people not to use remicade?

I'm actually quite surprised by that.

All I hear is wonders from everyone thats on it or thats been on it.
Posted 2/14/2017 1:11 PM (GMT 0)
No, I wouldn't tell people not to use Remicade - that's my whole point! It didn't work for me (and I gave it a whole year), but I recognise that I was unlucky and that it works very well for most people (it's just a pity about the side-effects for some of them).

But I would tell people not to use mesalazine for clearcut Crohn's disease (and not, eg. indeterminate colitis) because it really doesn't work well for that disease.
Posted 2/14/2017 1:13 PM (GMT 0)

beave said...
Broken Record alert!

Why are any of you taking mesalamines if you have Crohn's?

I wouldn't take them if they were free. And I sure wouldn't pay for them.

If you feel that you must be on them for some reason, find which one(s) is/are on your formulary. They're all equally (in)effective for Crohn's.

I'm not taking anything. My 10 year old son is. I'm not a doctor but literally the day he started Canasa his bleeding stopped. He may have UC, not Crohns. And if it is Crohns, it's mostly effecting his colon, so it would stand to reason that drugs that focus on that area would (and are) working for him.
Posted 2/14/2017 2:02 PM (GMT 0)

NiceCupOfTea said...
Beave isn't knocking people, he's knocking mesalazines and has done so for years on this board. You're taking it too personally.

True, but that's not what this thread was about. It was about the cost of Crohns medication. Right?
Posted 2/14/2017 3:17 PM (GMT 0)

beave said...
Broken Record alert!

Why are any of you taking mesalamines if you have Crohn's?

I wouldn't take them if they were free. And I sure wouldn't pay for them.

If you feel that you must be on them for some reason, find which one(s) is/are on your formulary. They're all equally (in)effective for Crohn's.

then what should i be taking? if not mesalamines?
Posted 2/14/2017 4:41 PM (GMT 0)
I actually think that part of the reason they are no longer covered is BECAUSE they are not really that effective with Crohn's. Why spend money on pills that you end up pooping out whole anyway? That was my experience - I would take 12 each day, and almost all of them just came straight out, still undigested.

As to what you should be on, Remicade and Humira are typically the most effective for Crohn's right now. I would see if your insurance will cover either of those.
Posted 2/14/2017 5:10 PM (GMT 0)

scifigal2k said...
I actually think that part of the reason they are no longer covered is BECAUSE they are not really that effective with Crohn's. Why spend money on pills that you end up pooping out whole anyway? That was my experience - I would take 12 each day, and almost all of them just came straight out, still undigested.

As to what you should be on, Remicade and Humira are typically the most effective for Crohn's right now. I would see if your insurance will cover either of those.

i noticed i would poop out Asacol but with Delzicol i'm good.

btw i'm on Remicade AND Delzicol AND Entocort EC.
Posted 2/14/2017 5:27 PM (GMT 0)
With being on Remicade, you may be able to drop the other ones just fine. Or at least the Delzicol. Are you on the entocort long-term? Since it is a steroid, it would probably be a good idea to start tapering it down.
Posted 2/14/2017 5:55 PM (GMT 0)
My insurance costs me $820 a month ($9,840 a year) for myself but my meds cost me $5, $10 or $50. Sometimes it's worth it to pay more upfront and there's less out of pocket costs. I have a PPO, I don't need referrals and it is accepted by most doctors.

They way that I look at is that my health insurance is my most important bill of the month and everything else is secondary. I recently had surgery and my 4 day hospital stay with the surgery was about 85K. My Stelara costs my insurance Co $105k a year. So my 10k a year for insurance is a good investment for me.

I wish that there was Medicare for all but that isn't likely to happen anytime soon.
Posted 2/14/2017 5:55 PM (GMT 0)
I was on them for like 7 years, and they must have helped because my Crohn's got better for quite a while. Now not so much.
Posted 2/14/2017 5:57 PM (GMT 0)
You could also look to get your meds from Canada.
Posted 2/14/2017 7:50 PM (GMT 0)

the-80s-rock said...
then what should i be taking? if not mesalamines?

Immunemodulators or biologics.

If your disease is mild or inactive there's a decent case to be made for taking nothing and monitoring your disease only. Mesalazine won't stop mild disease from getting worse, if that is the course your disease is genetically determined to take.
Posted 2/14/2017 7:52 PM (GMT 0)

NiceGuyEddie said...

NiceCupOfTea said...
Beave isn't knocking people, he's knocking mesalazines and has done so for years on this board. You're taking it too personally.

True, but that's not what this thread was about. It was about the cost of Crohns medication. Right?

Sorry, just saw this.

Yeah, it is and I'm sorry for taking it off track. I've got nothing to say on that front as I pay zero for my meds. I'm almost pathetically grateful for the NHS, but it doesn't help you guys unfortunately.
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