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$10 Lialda now $850! What's the alternative?

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Ulcerative Colitis
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Posted 11/8/2014 12:05 AM (GMT 0)
My GI over the phone said there is no substitute for Lialda and I need to come in a talk about it.

There must be a generic I can try! When I was in the hospital (for surgery, not IBD) they gave me 6 pills (3 twice a day) rather than 2 pills, 2.4 gm, of Lialda.

I have searched past posts and have seen a lot of names mentioned but they all might be brand name: Asacol, Apriso, Pentasa. What's Delzicol? I signed up for a Delzicol discount card just to see what will happen.

I am US Medicare Part D in the donut hole.

Generic Rowasa is just as bad. A generic, keep in mind, that used to be $5 or $20 and in now in the hundreds.
Posted 11/8/2014 1:03 AM (GMT 0)
Oral meslamine-based drugs in the USA are all brand named: asacol-hd, lialda, apriso, and Delzicol. All have discount cards that help some with out of pocket costs and copays (refer to the resources topic at the top of this forum for links). You can try Colazal which might be cheaper, it comes without the delayed release coating the others have. Sulfasalazine is a generic oral pill costing less than $100 a month that breaks down to both meslamine and sulfa in the gut (good unless you have a sulfa allergy).
Posted 11/8/2014 2:04 AM (GMT 0)
You can change medicare part d plans now, go to the medicare site plug in lialda and I find the aarp
plan the cheapest,but if your in the donut hole with some other drugs it may not matter much
but they seem to have a cheaper retail price on this drug then some other plans, plug in all your
drugs for you zip code and get the best plan.
Of course any changes takes effect on Jan 1.
Old Mike
Posted 11/8/2014 2:10 AM (GMT 0)
Asacol might be an option. It totally stinks that insurance makes it so difficult to get what we need at reasonable prices. I think delzicol is the same as Asacol 400.
Posted 11/8/2014 4:14 AM (GMT 0)
sadly, none of the discount cards work with medicare. only with private ins.

also, while there is no generic, there are substitutes. people have mentioned them. Lialda does work better for some, but some people do better on other brands

good luck
Posted 11/8/2014 12:23 PM (GMT 0)
When I was looking it up Balsalazide Disodium was the least expensive. 750mg Capsule 9 Per Day

Next least expensive was APRISO. For me.

Of course it's going to make a difference how many you are taking.

I made a list of all of the drugs, found out how many a day I would be prescribed, how much each pill would cost after calling around about any available discounts or programs.
Posted 11/8/2014 1:40 PM (GMT 0)
You may want to try picking up or going online to find the discount card for someone with no pharmacy coverage and use that discount, sometimes 75% off , instead of using your Medicare. You may get a much better price that way.
Posted 11/8/2014 5:18 PM (GMT 0)
Thanks for all the replies. In past years I would read posts on this forum and I told my husband that some people were not taking medication because of cost, or using, say, half an enema. I told him then that there is something very wrong with the system (at least is the US). The gap between cost with and without insurance is just too vast, insane. So I do "get it", and more so now that I am in that situation myself.

I do have enough Lialda and generic Rowasa to last through November '14 so I can use the time to explore discount cards that might work outside of US Medicare and some of the alternatives mentioned in the replies.

I do need help in talking with the GI about other products as his mind will not move beyond Lialda. For example, at my last visit he said that an Rx for 4 pills per day of Lialda (4.8 gm) was an overdose and the max was 2 (2.4 gm). Yet he wrote a prescription for 4 per day during a flare. I need an IBD specialist!
Posted 11/8/2014 8:01 PM (GMT 0)
Other options not me tioned so far, ordering generic, oral meslamine from Canada. There's been many threads on that topic here, use the search function.

If your GI isn't open to meds other then lialda then look around. Cost is a big concern to many, and if he/she won't prescribe cheaper alternates then find a new doctor.

Many take 4 lialda pills or 4.8grams as a maintenance dosage on an ongoing basis.
Posted 11/12/2014 10:01 PM (GMT 0)
DBwithUC and everyone; I called Shire 888-227-3755 and found a small exception to the rule that there is no assistance for those with US Medicare Part D. The program won't help me this year but I pass along the information in case it helps someone else.

Shire does have a program that helps with Lialda, even within part D, but it is dependent on number of people in the household and income. Or so they told me today.
Posted 11/13/2014 5:17 AM (GMT 0)
that sounds like the "Shire Cares" patient assistance program - income based. not sure how low income has to be to qualify. www.shire.com/shireplc/en/patient-support

the co-pay discount cards are the ones that do not work with any govt insurance (medicare, veterans...)
Posted 11/13/2014 3:20 PM (GMT 0)

naturalcurl said...
I have searched past posts and have seen a lot of names mentioned but they all might be brand name: Asacol, Apriso, Pentasa. What's Delzicol? I signed up for a Delzicol discount card just to see what will happen.

Delzicol is the new name for Asacol, with one inactive ingredient removed. They did this in order to get a brand new 20-year drug patent and prevent you from getting cheap generic Asacol when the Asacol patent expired months ago.
Posted 11/24/2014 1:08 AM (GMT 0)
The discount cards are fairly useless in the long term. In other words, you might get it a bit cheaper at the start, but soon you will be paying full price.

You can get generic Lialda from a Canadian online pharmacy...$355 for 400 1.2mg pills. I have ordered from CanadaDrugsOnline and it worked fine. You could order in in the next five minutes, but they won't ship until they get a prescription faxed from the doctors office directly, or you can mail the original prescription. It takes a looong time to get it! And the drug is manufactured in India. So if any of that bothers you, you can get it locally and pay your local pharmacy $10,800 for 400!

Post Edited (07vNH) : 11/23/2014 6:11:19 PM (GMT-7)

Posted 11/24/2014 4:54 PM (GMT 0)
By the time I pay for my meds, I am low-income. It's so frustrating.
Posted 12/4/2014 7:46 PM (GMT 0)
Sorry I have no helpful info to share. Just want to say that dealing with getting the meds needed to get and stay in remission is so maddening. I was just prescribed Lialda recently for first time, and it was originally denied by my ins, but was given the instruction to have Dr submit pre-auth form to ins and then ins would review and might approve. To which after a week they did. Have now been on for a week. I also, went to get prescription for Rowasa and Canasa and both were denied and am now n waiting period to have Dr submit pre-auth forms again in hopes to have them approved. As I get worse everyday.

I am sorry you are having difficulties as well. And wish you the best of luck. It sucks already having our issues and all we are trying to do is get better.
Posted 12/5/2014 4:48 AM (GMT 0)
I'd say move to Canada, but then you'll just end up paying a fortune in income taxes and be frozen for most of the year - but hey, we have awesome whiskey and beer!

No, I don't know much about this stuff but from time to time I read about people buying from pharmacies in Canada for a substantially reduced price - Maybe this is an option?? Others would know.

Personally I'm a little leery though on the whole "on-line" pharma thing. But though I'd suggest it as an option to look into if you're stuck.


EDIT: Oh. I just read up a few posts and it seems a few have suggested this option as well! Haha - Sorry for not reading the whole thread eh...

:)

Post Edited (Canada Mark) : 12/4/2014 9:52:27 PM (GMT-7)

Posted 12/5/2014 5:44 PM (GMT 0)
Crazy suggestion but have you thought about other medications instead of 5ASAs? Like Remicade or Humira; they are usually subsides by the manufactures so we only have to pay $25-$30 a dose.

6-MP or Imuran might be cheaper as another option.

I know that it's not something that you probably want to do but they are usually "stronger" at treating UC. So long-term they might work better for you.

I'm sorry that the crazy cost of medicines are preventing you for using a medication that is currently working for you. I thought they closing parts of the donut hole with the ACA and eliminating it 2020.
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