Just Got Screwed - Insurance Problems - Med Advice Please!

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RH_Texas_Gal
Regular Member


Date Joined May 2009
Total Posts : 367
   Posted 9/29/2010 1:33 PM (GMT -6)   
I am fighting to the death for my right to have Lialda approved by my insurance company as it has been the one medication to keep me in remission. I don't want to rock the boat and risk where I am with trying new meds. However, should I be totally *!%* by my insurance company, how does Pentasa compare to Lialda?

I also have an application at the Shire Cares patient assistance program for free or reduced Lialda medication but they too are waiting word from my insurance company.

I have been jerked around for two weeks so far with finger pointing and he said/she said crap. I just want a final answer so I can go on from here. I received Lialda last year from the Shire company but they changed things around a bit so my application for meds is on hold until my insurance company pees or gets off the pot, as my old granny would say.

Can you tell me how Pentasa compares with Lialda? Right now I take one 1.2 g pill of Lialda a day (two during hormonal times) ... is it the same type of medication but different release rates? My insurance company is waiting for yet another doctor authorization form (this will make the 5th time they are sending it - my ins. company must really suck) and they kept on asking me about Pentasa or Asacol. I do NOT want to have to take Asacol because it upset my stomach having to take 8-10 a day ...

I could use some pep talk here with some positives about Pentasa if I should be thoroughly screwed by my insurance company. Thanks!

Post Edited (RH_Texas_Gal) : 10/4/2010 4:01:21 PM (GMT-6)


AZYooper
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Date Joined Mar 2010
Total Posts : 1104
   Posted 9/29/2010 3:56 PM (GMT -6)   
The insurance company/doctor battle thing is really just a total nightmare. Been there done it. Not worth going nuts over it. Is Lialda specifally mentioned in your plan as not covered?

I looked up Pentasa and Lialda on my plan. Both are expensive but not a lot more so. On a daily does of 1.2 grams not much, less than $10/month

I am a little confused on your dosage. Asacol, Lialda and Pentasa are basically equivalent as far as total daily dosage. One lialda tablet is equal to 3 asacol or between 2-3 Pentasa. You could just take 3 asacol and be getting the same dosage as one lialda.

I have a problem with taking a lot of asacol for a long time but when I reduced it to 1.6 gr/day it didn't bother me. Same thing with colazal. High dose makes me feel like crap.

Pentasa uses controlled release beads inside a capsule. Asacol and Lialda both use a resin coating that breaks down above a Ph of 7. They are all the same drug...mesalamine.

Somebody posted an article the other day that compared how all the different pills work and when they release the mesalamine.

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 905
   Posted 9/29/2010 4:07 PM (GMT -6)   
I switched from asacol to pentasa because the asacol tabs were not dissolving very well, especially if I was flaring at all. Pentasa is actually a capsule full of little round spheres of mesalamine coated to delay release. Some dissolve right away in the small intestine, while others gradually start to dissolve as they move down the intestine. This is why it is used for Crohn's as well as colitis since it is designed to release throughout the small and large intestines.

I completely stopped taking pentasa and switched back to asacol and then finally apriso when a colonoscopy revealed that my U.C. has become predominantly left sided. It's useless for me to have most of the mesalamine in the small bowel and the ascending and transverse colon as these areas are perfectly healthy, even when I am really flaring badly.

If you know Lialda works for you, you need to fight to get it. If I was in your situation, asacol would be my second choice. Isn't there also Asacol HD? That would mean fewer tabs to take.

I'm surprised asacol tabs cause stomach upset since they just pass through undissolved.
DX Pancolitis 2003. Subsequent flares limited to left side
Flare every 2-3 years.
Apriso 8 tabs daily,
Probiotics: Primal defense, Ultimate Flora and VSL#3DS. Fiber: Psyllium and "super seed".
Allergic to Imuran

Currently mild flare last 6 months. Limited to Rectum and lower sigmoid. No diarrhea.
Switched from Cortifoam to Colocort 2x daily.
Enemas put me in remission, but need to taper ASAP

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 4530
   Posted 9/29/2010 8:59 PM (GMT -6)   
Have you discussed the Rx insurance problem with your gastroenterologist? Your doctor should be able to help you get continuing approval for Lialda coverage, unless the insurer flat-out declares that they don't cover it at all. I can empathize with your situation because I went thru hell last yr getting my insurer to pay for brandname Colazal. They got convinced that I do need it after they saw my record of UC flare while on generic Colazal. Now my gastro has to file the support document on my behalf at the end of each yr-- worth the trouble to get the med I need!!!!!! These insurers are bottom-line devils; it really does not cost them near what it costs us to buy these meds privately-- so keep pressing your point wherever possible: you need this particular med because you get sicker w/o it! / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)

RH_Texas_Gal
Regular Member


Date Joined May 2009
Total Posts : 367
   Posted 9/30/2010 9:21 AM (GMT -6)   
My records already show that I cannot take asacol ... while it is the same type of drug as Lialda, I had to take more of it and I was always nauseous and the asacol didn't always dissolve. I achieved and retained remission with Lialda so I KNOW it works.

The insurance company has not flat out denied Lialda (it's a tier 3 drug) but with the asacol, Pentasa and sulfasazine (sp?) available too at a cheaper price, they are playing hard ball, trying to deny me my drug and make me take those others.

My doctor is trying his hardest on my behalf to insist that Lialda is the only drug I can take effectively. The insurance company keep "requiring" new forms for the doctor to fill out and they claim they cannot find the faxes when they are sent! (Yeah right - the a**holes) ...

My problem is that my emotions are always on the surface. If I am happy, I get teary eyed; if I am sad I get teary eyed. if I get well and truly pissed, I not only get teary-eyed but also my voice shakes and cracks. People mistake that often for crying to get my way ... geez! Talking with my insurance company, my blood pressure went from a normal 105/60 to 144/89 within 10 minutes of their runaround ... I cannot handle much more of this.
1 Lialda a day maintenance dose (2 during PMS)
Fiber supplements (as needed)
probiotics - 2 capsules a day (each 40 billion count)
iron supplements
vitamin D-3 supplements
Fish oil capsules
Citrical calcium supplements

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 905
   Posted 9/30/2010 9:54 AM (GMT -6)   
These people at the insurance company must be idiots with zero understanding of what ulcerative colitis is really like. You can't just go switch from a drug you know works to some drug with unknown effects. The risk of a flare and continued symptoms is just too great, and flares, as many of us know, can be extremely difficult to get under control. They need to to understand that sulfasalazine is NOT a generic form of lialda, nor are colazal and lialda equivalent.

If they haven't denied you outright, then they have left the door open to it. I would ask them why they want to put your health at risk, and I would keep asking and asking that question, and keep phoning back and talking to different people. Sometimes it just takes finding a knowledgeable, helpful person and the problem is solved.

Best of luck. Hope things work out.
DX Pancolitis 2003. Subsequent flares limited to left side
Flare every 2-3 years.
Apriso 8 tabs daily,
Probiotics: Primal defense, Ultimate Flora and VSL#3DS. Fiber: Psyllium and "super seed".
Allergic to Imuran

Currently mild flare last 6 months. Limited to Rectum and lower sigmoid. No diarrhea.
Switched from Cortifoam to Colocort 2x daily.
Enemas put me in remission, but need to taper ASAP

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 4530
   Posted 10/1/2010 9:42 PM (GMT -6)   
RH Texas Gal, I mentioned your problem to my gastro, who says that an insurer recently tried to force a Crohn's patient with small intestine inflammation from Pentasa to Canasa-- so they're fighting it. No way can a suppository treat the small intestine!!!!! These insurers are outrageous, trying to tell doctors what IBD meds work where. RE insurer's staff informing you that your supporting documents have been "lost", ask for their name & office location, then keep a record every time this happens to build your case against them. Peety can probably give you further advice about this. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3250
   Posted 10/2/2010 7:12 AM (GMT -6)   
Here's an article comparing various 5-ASAs....hope it helps some.

http://www.medicinenet.com/ulcerative_colitis/page5.htm
Co-Moderator, UC Forum
Age 54. Diagnosed UP 1983, UC 1986
Asacol - down to 13 pills/day,
almost off Cortenemas. Rowasa 2x a week.
Metamucil - 2 doses/day
VSL#3DS and other probiotics, Multivitamin, Calcium and D
homemade yogurt each day
doing well!
Son, 17, dx pancolitis 2007, in remission

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1121
   Posted 10/2/2010 4:28 PM (GMT -6)   
C_G_K said...
I switched from asacol to pentasa because the asacol tabs were not dissolving very well, especially if I was flaring at all. Pentasa is actually a capsule full of little round spheres of mesalamine coated to delay release.
Interesting point about Asacol. I'm having the same problem with asacol dissolving.  I'll add Pentasa to my "wish list"

41 year old female Accountant, diagnosed July 2010
flaring as of 8/21/2010 for 2 days,
last flare Feb 2010 - July 12, no blood after colonoscopy
Rectosigmoid up to 30 cm....very mild?
Mesalamine 4gm enema taporing every other day
Asacol oral 2 pills 3x daily - starting low
Folic Acid 1 mg daily / Probotics / Calcium + Vit D / Bene-fiber
Microgestin (birth control), Magnesium for leg cramps

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 4530
   Posted 10/2/2010 8:30 PM (GMT -6)   
Pentasa is optimal for small intestine inflammation and/or right-sided UC, i.e., inflammation in the ascending colon. The oral mesalamine that has the best chance to medicate proctosigmoid UC is COLAZAL, not Pentasa! / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 10/2/2010 8:45 PM (GMT -6)   
My understanding about all the mesalamines on the market is they are each designed to dissolve differently to treat different parts of the intestinal tract.  What sucks is I got switched mid stream from lialda to pentasa, and have all these lialda pills I can't use......what a waste of money.  I wish you luck, but I would think your DR would tell the insurance that you cannot tolerate the other.  Besides, I thought the pentasa was for the small intestine?  Yes I am a crohnnie, but I started here and check in this thread once in awhile.
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
Caltrate-D 1000mg/day

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 4530
   Posted 10/2/2010 9:07 PM (GMT -6)   
Absolutely right, mdf34-- and the salient point of this thread is that MANY INSURERS REFUSE TO RECOGNIZE THAT because they do not want to pay for some formulations of mesalamine. So they try to claim that all mesalamines are the same and therefore expect patients to switch their prescription to whatever they (insurer) are willing to pay for! / Old Hat (30 yrs with left-sided UC;presently in remission taking brandname Colazal)

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 10/3/2010 5:52 PM (GMT -6)   
My former GI Maria Abreu Chair of U of M gastro dept is considered one of the top GI docs in the US switched me from Asacol to Pentasa; from what I remember she said it is designed to disperse better with a wider coverage range than Asacol or Lialda.
Dx'd with moderate Pancolits 05/07 better with Pentasa and rectal meds as needed.
I also take Probiotics, Fish Oil, Curcumin, Benefiber and cannot tolerate artificial sweetners (never could even before UC) I also stay away from products with high fructose corn syrup.
 
 
UC Forum Co-Moderator
I am not a healthcare provider. I am offering support and guidance based upon my own conclusions and/or research. ALWAYS consult with a qualified healthcare provider.

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 905
   Posted 10/3/2010 7:48 PM (GMT -6)   
I read somewhere that Pentasa is very popular in Europe for U.C., but I won't use it anymore since my whole ascending and transverse colon shows no signs of U.C. or scarring from chronic U.C.

If I had ongoing inflammation in the entire colon and fast transit times I would consider pentasa again.
DX Pancolitis 2003. Subsequent flares limited to left side
Flare every 2-3 years.
Apriso 8 tabs daily,
Probiotics: Primal defense, Ultimate Flora and VSL#3DS. Fiber: Psyllium and "super seed".
Allergic to Imuran

Currently mild flare last 6 months. Limited to Rectum and lower sigmoid. No diarrhea.
Switched from Cortifoam to Colocort 2x daily.
Enemas put me in remission, but need to taper ASAP

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 10/3/2010 8:03 PM (GMT -6)   
This is what I thought about where they are supposed to work....
 
Lialda---Large intestine, along with possibly rectal meds.
 
Pentasa---Lower small intestine
 
Asacol---Upper small intestine/stomach
 
I know the first 2 are made by Shire.  My wife (she has a different set of issues from me) just got asacol in a generic brown bottle so not sure of manufacturer without looking it up.
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
Caltrate-D 1000mg/day

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 905
   Posted 10/3/2010 8:14 PM (GMT -6)   
mdf34,

I think it is more like this:

Lialda and Asacol, terminal ilium (end of small intestine) and colon.

Pentasa, entire small intestine and colon.

Problem being that Lialda and Asacol release based on PH and not everyone has the same PH so they don't always release when they are supposed to.
DX Pancolitis 2003. Subsequent flares limited to left side
Flare every 2-3 years.
Apriso 8 tabs daily,
Probiotics: Primal defense, Ultimate Flora and VSL#3DS. Fiber: Psyllium and "super seed".
Allergic to Imuran

Currently mild flare last 6 months. Limited to Rectum and lower sigmoid. No diarrhea.
Switched from Cortifoam to Colocort 2x daily.
Enemas put me in remission, but need to taper ASAP

RH_Texas_Gal
Regular Member


Date Joined May 2009
Total Posts : 367
   Posted 10/4/2010 1:12 PM (GMT -6)   
Songlady - thanks for that link ... it does help me understand a bit better about how the different drugs work and which parts of the body the meds release into ...

My insurance company is doing a major jerk-around, wanting me to try Sulfasalazine instead of Pentasa ... I looked at the ingredient list and there are some things that cause nausea and headaches. However, because I have not tried the Sulfasalazine yet and provide evidence that I have failed on it, they do not want to prescribe Lialda ... no matter what my doctor says. My doc is still working on my behalf but who knows what will happen. My only hope now is getting Shire pharmaceuticals to come through for me. -- Just talked to Shire Cares patient assistance program and they cannot help me unless the insurance company definitively provides the paperwork that they will not approve Lialda and there is no other drug available to me. (Sounds like Shire Cares is not so caring anymore :(

Post Edited (RH_Texas_Gal) : 10/4/2010 1:09:57 PM (GMT-6)


RH_Texas_Gal
Regular Member


Date Joined May 2009
Total Posts : 367
   Posted 10/4/2010 5:06 PM (GMT -6)   
I have been unequivocably denied for Lialda and I cannot get any assistance through Shire pharmaceutical. So ...

I am making an appointment with the doc (hopefully this week) to review my drug options. I believe my options will be Sulfasalazine, Pentasa or Asacol ...

Can you guys give me your thoughts on these 3? Given that Lialda was a wonder drug for me, which sounds like the better choice? My UC consisted of spots throughout my colon (although not near the rectum), not just one area. I would rather not take Asacol because I don't look forward to losing my hair again but who knows WHAT the insurance company will ultimately do?
1 Lialda a day maintenance dose (2 during PMS)
Fiber supplements (as needed)
probiotics - 2 capsules a day (each 40 billion count)
iron supplements
vitamin D-3 supplements
Fish oil capsules
Citrical calcium supplements

RH_Texas_Gal
Regular Member


Date Joined May 2009
Total Posts : 367
   Posted 10/4/2010 5:08 PM (GMT -6)   
sorry if I sound whiny ... I am just frustrated right now. I've been luck with remission and just don't want to chance another flare after almost two perfect years. Some of you are UC veterans and I value your experiences and advice :)
1 Lialda a day maintenance dose (2 during PMS)
Fiber supplements (as needed)
probiotics - 2 capsules a day (each 40 billion count)
iron supplements
vitamin D-3 supplements
Fish oil capsules
Citrical calcium supplements

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 4530
   Posted 10/4/2010 10:09 PM (GMT -6)   
From your sig it looks like you need to acquire 30-40 caps of Lialda per month. Why not try pricing them at different pharmas in your area? If you buy Lialda yourself for a month or two, the insurer might relent & cover you-- because you proved that you really must have IT, not a substitute. That worked for me, and my insurer reimbursed what I paid out-of-pocket eventually. Otherwise, you could at least declare it on your income tax. My feeling is that when we find a med that works to quiet our UC, we have to stick with it to stay in remission. Period. / Old Hat (30 yrs with left-sided UC ; presently in remission taking brandname Colazal)

misshyena
New Member


Date Joined Sep 2010
Total Posts : 10
   Posted 10/4/2010 10:48 PM (GMT -6)   
RH_Texas_Gal - If you don't mind me asking - which insurance plan do you have? I am one of those "idiots" who works for a major health insurance company in the Pharmacy Prior Authorization department (alas, I also suffer from Ulcerative Colitis). There is always an "exception" to the policy criteria (unless you have one of the bigger evil insurance providers who are completely unethical) and there is an appeals process (which it sounds like you're going through already). Usually, clinical pharmacy staff review the prior authorization forms sent in by the providers while applying the standard policy criteria. 9/10 times usually the provider sends in insufficient documentation that prevents us from making a favorable determination (like simply putting a diagnosis and signing the form without previous treatments failed or a supporting statement as to why the provider feels drug x is superior to drug y). If the person reviewing it is not a pharmacist but there appears to be a clinical benefit/improvement from the medication it is usually then sent to a clinical pharmacist or medical director for further review. At the company I work for, if we build our case in the patient's favor, we can get it approved and authorized a great percentage of the time. I pride myself on being the member's advocate in a system that is broken, confusing, and often unreliable. I empathize with every single UC member who has a Remicade request submitted for review. I also feel for them when they request Humira and it shows clinical improvement but I'm forced to deny it because Humira hasn't been FDA approved for treatment of UC (even though there are MANY people who have shown improvement on it) - it all comes down to politics and money. This is exactly what is wrong with our health care system.

Anyway, KEEP FIGHTING! It may be aggravating and frustrating but do not give up until you know you've exhausted ALL resources available to you - and DEMAND to speak to supervisors, clinical pharmacists, medical directors, clinical pharmacy managers, etc. I can't tell you how many times a denied request has been overturned because the member was angry and demanded coverage of a medication that has proven effective and has improved a member's quality of life. Stay strong!

RH_Texas_Gal
Regular Member


Date Joined May 2009
Total Posts : 367
   Posted 10/5/2010 2:44 PM (GMT -6)   
thanks for the info misshyena! I have United Healthcare with Informed Rx as my drug insurance ... I will still fight and I have an appointment to talk with my doctor about my options. He is going to bat for me too as he has seen me at my worst in the hospital and at my best (for the past two years).

It is just so aggravating! Old Hat, I didn't know you could claim meds on income tax. I will have to look into that!
1 Lialda a day maintenance dose (2 during PMS)
Fiber supplements (as needed)
probiotics - 2 capsules a day (each 40 billion count)
iron supplements
vitamin D-3 supplements
Fish oil capsules
Citrical calcium supplements
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