HealingWell
Search Close Search

Insurance no longer covering lialda or its generic

Chronic Illness Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/17/2019 10:07 AM (GMT -7)
My teenage son has miraculously stayed in remission (had moderate to severe Pancolitis) on his current regime of 4 tablets Lialda daily, probiotics, various supplements and SFROWASA a few times per week. We didn’t even switch to the generic Lialda when it came out bc we heard too many stories of people falling out of remission. Well now we just got notice that insurance won’t cover Lialda or it’s generic starting 10/1 (thanks, not, for great notice). The only alternatives they are offering are APRISO, PENTASA (which the multi times per day dosing won’t work given age), balsalazide, sulfasalzine, and sulfasalazine delayed-release.
Thoughts on whether i should try to fight to continue on lialda or at least its generic (in what way does it differ from the suggested meds such that i could have grounds he needs it)? Thoughts on which would be the best alternative? He also suffers from pretty serious IBD related joint pain--if that’s relevant.
Thanks
Teen diagnosed with pancolitis in 2016 in rem
--Current: Daily: 4 Lialda daily, VSL3DS, 4 Metamucil capsules, turmeric, multi vit w methyl folate. SFRowasa as needed.
--Diet: Gluten-free, organic, no emulsifiers or preservatives, Low FODMAP
Posted 9/17/2019 10:54 AM (GMT -7)
Would twice a day work? Morning and night.

Either would be an option. If he can't use either, then fight for the Lialda generic.
Really hard to hear they won't be covered.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Oxeze/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 50 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
~Sjogren's (secondary)...symtomatic treatment
"TREAT (FROM)BOTH ENDS" worth it !!
Posted 9/17/2019 12:04 PM (GMT -7)
Does he have a sulfite allergy, given the SFrowasa? If so avoid Sulfasalazine as it contains a sulfite. Sulfasalazine is good for joint pains, it is prescribed for RA as well.

Apriso is once a day, just 4 small pills totaling 1,500mgs. He might like that one. There's a copay.deductible discount card for it.

I've taken brandnamed Lialda, generic lialda (Zyduyus), Brandnamed asacol HD, and generic Asacol HD all without any issue. Not everyone has issues switching among them, I did not.
Moderator Ulcerative Colitis
John, UC Proctosigmoiditis in Remission
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP; nightly Rowasa
You cannot spell sUCks without UC.
Posted 9/17/2019 12:13 PM (GMT -7)
He could manage with 2x a day but definitely not 3x per day. For some reason he does fine with the sulfite in the mesalamine but the topical sulfite in the rowasa caused some swelling so we switched in abundance of caution. Our doctor has discussed the sulfasalazine for the joints before, and so it has been on our radar, but the side effects sound much more intense. I guess i feel he is doing so well (gut wise) on the lialda and has no side effects and so would like to move to whatever is most comparable before switching to sulfasalazine. He currently takes 4 tablets of Lialda though so not clear what that would translate to for Apriso. I know Apriso is effective at a lower dose than Lialda but I think he would still need close to 8 tablets of Apriso and I can’t find anywhere that it has been studied in that dosage--whereas Lialda at 4 Tablets is pretty normal.
Teen diagnosed with pancolitis in 2016 in rem
--Current: Daily: 4 Lialda daily, VSL3DS, 4 Metamucil capsules, turmeric, multi vit w methyl folate. SFRowasa as needed.
--Diet: Gluten-free, organic, no emulsifiers or preservatives, Low FODMAP
Posted 9/17/2019 12:14 PM (GMT -7)
So is APRISO chemically the closest to Lialda??
Teen diagnosed with pancolitis in 2016 in rem
--Current: Daily: 4 Lialda daily, VSL3DS, 4 Metamucil capsules, turmeric, multi vit w methyl folate. SFRowasa as needed.
--Diet: Gluten-free, organic, no emulsifiers or preservatives, Low FODMAP
Posted 9/17/2019 1:50 PM (GMT -7)
They're all a little bit different (different patented coating, different inactive ingredients, etc etc), and no one can say which is the closest to what he is taking now. Pretty sure apriso at least has a MMX plastic-based coating like Lialda does. Pentasa has an ethacellulose delayed coating which is quite a lot different. Apriso is at least once a day administration (like lialda is), and the rest are 3 times a day administration. Can't say it is absolutely the closest to lialda but can say maybe it is closer to your wants then what the others are.
Moderator Ulcerative Colitis
John, UC Proctosigmoiditis in Remission
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP; nightly Rowasa
You cannot spell sUCks without UC.
Posted 9/17/2019 2:35 PM (GMT -7)
frustrating isn’t it ... just look at how allegran plays games in keeping their exorbitant pricing
https://www.google.com/amp/s/www.bloomberg.com/amp/opinion/articles/2018-01-09/how-allergan-continues-to-make-drug-prices-insane
female born in 1959
Acute proctitis dx in 1991 - progressed to left sided then pancolitis - rx’s maintain remission
Also suffer from fatigue, degenerative arthritis - multiple joints & osteopenia
Current Rx Asacol HD 2400mg/day
Previous asacol, rowasa, delzicol, & dipentium
Steroid enema treatment severely exasperated bleeding
Posted 9/17/2019 3:18 PM (GMT -7)
Try for a formulary exception from the insurance company. The doctor can communicate that this is important; if that doesn't work, followup with a written request documenting the situation with dates and details. He is already on the medication which seems like a strong case to continue. Do they know the potential consequences (expensive for them) if he comes out of remission? If not, throw that into your argument.
"Elderly" F on US Medicare. Diagnosed 2010 left-sided inflammation. Three different MD opinions: UC (likely), Crohn's, indeterminate. Trying Balsalizide 750 x9per day. Long history of Lialda/mesacol. On hand: generic Rowasa, Cortenema Canasa, Uceris foam. January 2019 starting 16 days of pred. taper 30mg to 5. GI wanted Humira; IBD specialist suggests Entyvio. No biological yet.
Posted 9/18/2019 9:43 AM (GMT -7)
Hm. I’m having the opposite problem. My drug formulary is discontinuing Apriso. The book says you can ask for an exception. It’s on my list to call to start the process but I’ve been putting it off because I know it’s going to be a hassle.

I don’t know about Lialda but Apriso manufacturer has a copay and a no pay assistance programs. I need to call them to see if they’ll put me back on the nopay program if I can’t get the exception. It’s Another way to get your meds without insurance.
UC pancolitis DX March 2016, Partial Colectomy for diverticulitis Sept 2014
Apriso .375 g x 4/day, Canasa & Uceris foam if needed.
Probiotics, Reuteri pearls, CoQ10, Metamucil daily.
Started Entyvio 3/29/17 (Constant flares since March 2016 only relieved by Prednisone)
IN REMISSION!
Posted 9/18/2019 3:59 PM (GMT -7)
I would try an appeal to the insurance company before switching to another med. The alternatives they are suggesting are capsules instead of tablets and may not release the same way as Lialda. I never tried Pentasa, but I believe it releases earlier than the other meds. Apriso didn't work for me at all. I did much better on Asacol HD

btw ... Apriso isn't little tablets ... they are huge capsules, but you only have to take them once a day so thatis a bonus

I wish insurance companies had some understanding of how hard it it to find something that keeps us in remission and how horrible flares are. I think they would look at things very differently.
60 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission on Entyvio 10/2016-12/2017 before losing response. Had response to Humira with loading doses in Nov 2018, but then lost response. Current meds: Remicade 3/15/19, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). Dexilant.
Posted 9/19/2019 5:49 AM (GMT -7)
My insurance company (BlueCrossBlueshield of Alabama) specifically lists Lialda (generic Lialda) as the preferred drug to use instead of Asacol or Asacol HD, which they do not cover. So I agree with the posters above you should first appeal to your insurance company.

If that fails, another thing you can look into is getting your prescription filled internationally. It's legal under US law for you to do this to fill your personal doctor-written prescription if you order no more than 3 months worth at a time. It is a bit sketchy doing this as you're going outside the FDA inspection system and depending on another country's regulators. But look into it and see if you're comfortable. I'm currently getting my generic Lialda manufactured by Sun Pharma for $1.02 per pill instead of the $6.50 per pill my insurance company's mail service charges. They also offer brand name Mezavant (international name for Shire-manufactured Lialda) at $2.15 per pill.
2 Lialda daily
100 mg Imuran
Generic Centrum multivitamin
Sometimes a fish oil pill
VSL, going to Visbiome probiotic
2000IU Vitamin D
Posted 9/19/2019 9:51 AM (GMT -7)
It's pretty dumb, but each insurance company has their own preferred mesalamine. It all comes down to which pharmaceutical company will negotiate the lowest price with them. You and I are at the mercy of their whims. Sometimes appeals win, just know that even if you win you have to pay a higher rate for your preferred med. I'd at least give the other preferred med a shot before going down the whole route of appeals, waiting, more appeals, and all of the bureaucratic nonsense to get an exception. Often the switches are uneventful and you do just fine on the other med. In the event you have worse results, then appeal as you then have a good reason and might win.
Moderator Ulcerative Colitis
John, UC Proctosigmoiditis in Remission
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP; nightly Rowasa
You cannot spell sUCks without UC.
✚ New Topic ✚ Reply

Forum Information

Currently it is Thursday, November 21, 2019 4:55 AM (GMT -7)
There are a total of 3,098,538 posts in 337,487 threads.
View Active Topics

Who's Online

This forum has 165316 registered members. Please welcome our newest member, Kevinganit.
221 Guest(s), 3 Registered Member(s) are currently online.  Details
Tudpock18, carlnpa, UnsightlyCignet☄️