HMO rejected my Remicade. le sigh. *** is Lialda?

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gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 1/15/2010 7:09 PM (GMT -7)   
Soooo.
I just got the call. The HMO won't approve the Remicade, so it looks like I'm going on some type of pill medicine.
My GI said I might try Lialda first, but I read somewhere that it's expensive. What if that gets rejected too?
Am I going to get bumped further to something cheaper and weaker? My Crohn's is all in the rectum. I have an abscess and a fistula. Can a pill really reach that far down or I am going to be prescribed a dreaded suppository???confused
I hear the side effects are mostly headache and diarrhea.
Any opinions?
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
My HMO refused the Remicade and now I could be going on Lialda or sulfa? blah


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 1/15/2010 7:27 PM (GMT -7)   
Flagyl (antibiotic taken orally) would be the first choice for treating the abscess and fistula. Sulfasalazine can be good for keeping Crohn's in the large intestine under control, but is not likely to do something for an already existent abscess and fistula. (Nor would any of the mesalamine drugs.)

Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 1/15/2010 7:39 PM (GMT -7)   
The suppository is not that bad. I've been doing them just about every day for several years now. Canasa seems to really help my rectal symptoms.
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


BensMom
Regular Member


Date Joined Mar 2006
Total Posts : 57
   Posted 1/15/2010 8:23 PM (GMT -7)   
Hi,
 
Just wanted to let you know that if you go to lialda.com, you can sign up to get a free 30 day trial of the medication.  They also have a prescription card that they can send you so that your co-pay is only $10.  Worth looking into, anyway.
 
Take care,
Nancy (son Ben,15,CD; Remicade)

basil
Regular Member


Date Joined Oct 2008
Total Posts : 78
   Posted 1/15/2010 9:26 PM (GMT -7)   
My HMO didn't cover Lialda either, so I take Colazal instead (which comes in generic form so it's a cheap co-pay). I at one point also used the Canasa suppositories and while I was very wary of them, they weren't bad at all. Good luck with your HMO- I hate insurance companies!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/16/2010 8:03 AM (GMT -7)   
Azulfadine is a good med if you are not allergic to sulfa. I used it successfully when first diagnosed and it worked well for me. I am now maintained with Asacol alone and its doing good for me now too. Good luck with whatever new med you choose. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 1/16/2010 12:32 PM (GMT -7)   
I'm worried that these pills won't do anything to repair a fistula and abscess.
I took Asacol as a kid and I asked my GI if I could just take that and she said it wasn't strong enough.
I looked up lialda and all the information I could find refers to Ulcerative Colitis, so I'm not sure what to think about that.
I suppose I just have to pay my dues and take these pills when really the thing that will wipe out a fistula is remicade.
booo
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
My HMO refused the Remicade and now I could be going on Lialda or sulfa? blah


BensMom
Regular Member


Date Joined Mar 2006
Total Posts : 57
   Posted 1/16/2010 12:52 PM (GMT -7)   
Have you tried calling the makers of Remicade to see if there are any financial assiatance programs they can offer you?  Centocor has what they call the access one program.  You can call them at 1-888-222-3771 and check out the following link  http://www.centocoraccessone.com/centocoraccessone/pages/remicade/index.jsp
 
I thought the advantage of Lialda was that it was similar to Asacol, but you had to take a smaller number of pills and could take it only once a day.  I didn't realize it was stronger than Asacol.
 
Take care,
Nancy (son Ben,15,CD; Remicade)
 
 

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 1/16/2010 2:14 PM (GMT -7)   
That stinks!
 
Here are two sites you should check out:
 
NeedyMeds lists all the meds commonly used to treat IBD, and has links to patient assistance programs.  For remicade, it says the patient must not have Rx coverage for it, which you don't, since yours won't cover it.
 
If you want to try to fight with your insurance company, a patient advocate might be able to help.  They pretty much argue with your insurance company for you.
 
Good luck!
 
Co-Moderator, UC Forum
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 1/16/2010 2:25 PM (GMT -7)   
Yes, I just got my first prescription filled with a card I got from the Dr. so that Lialda will only cost me $10. I am insured and do not fall into a needy income category (yet, this IBD is costing me tons of money!) So, the card does work. You have to call the toll free number to activate it but it does work!
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma & IBS, low thyroid,claritin, advair, singulair, lisinopril, progesterone, colazal, fish oil, synthroid, zoloft, wellbutrin, VSL#3 probiotic, Vit. D
Blood test positive for Crohn's via prometheus ibd serology panel
 


bowlies
Regular Member


Date Joined May 2007
Total Posts : 69
   Posted 1/16/2010 11:12 PM (GMT -7)   
You know that you can and should appeal the HMO's decision. They will probably say no a few times before they say yes. Is you doc involved in trying to get the HMO to consider Remicade. Of course they don't want to pay for Remicade. It is expensive and they will do whatever they can to get you and your physician to back down. I know the fight is hard but it is most often worth it. Good luck!

zztop
New Member


Date Joined Jan 2010
Total Posts : 5
   Posted 1/17/2010 12:09 AM (GMT -7)   
Hi hope you have luck with Remicade, here in Australia Remicade and Humira are funded by the Government if you meet
with their criteria which i did luckily. Remicade was good for my fistulas however i developed antibodies and am now trying Humira
self injecting every 2 weeks, so far so good. will keep you posted.

snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 1/17/2010 5:46 AM (GMT -7)   
Not being in the US I can only repeat what others have said - don't take a single "no" as the definitive answer, plenty of people get it on appeal (there are lots of posts in the past about this appeals process) - and the suppositories are not that bad !
I also had the same problem, albeit not as badly as you do, and it was a pleasant surprise to find that the suppositories were not only not uncomfortable, but also did the job very well because they put the medication to exactly the place where it was needed. I thanked God for them because I had spent 18 months trying other meds which gave me all sorts of side-effects, and basically left me sick as a dog for the whole time.
idea If I was in your shoes, I'd think of trying the suppositories while fighting an appeal. Best of luck whatever you do ! wink

Crohnie4Life
Regular Member


Date Joined Jan 2010
Total Posts : 69
   Posted 1/17/2010 6:49 AM (GMT -7)   
That's crazy that your HMO won't pay for the Remicade! Sorry about that. Has your doc not talked to yu about Flagyl or Cipro yet? Maybe Flagyl would help with the abscesses and fistulas.

Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 1/17/2010 4:14 PM (GMT -7)   
Lialda is just under 300$ for one month, 60 tablets, cash price.

My g.i. gave me several bottles of samples when I asked, each bottle has 60 tablets.

You can also try the links below to see if you can get if for free. The first one is an application to get it free from the company, the second link is a free 30 day supply coupon.

rxassist.org/Search/Prog_Details.cfm?program_Id=439&PD_Id=1715&Drug_Id=2463&Company_Id=84&search_type=2

www.patientassistance.com/D8834-lialda-tablets-l2mg-mesalamine-coupon.html
Humira 2 x month, Lialda 2 x day, Imuran 100mg x day, Remeron 30mg x day, Pain Meds, Zantac 300mg 2 x day, Prednisone 2.5mg x Every third day(01_02_10), Vitamins = B12 Injection(Once x Week), Magnesium, Calcium, Multi-Vitamin, Potassium, Folic Acid. (Phenergen 25mg Per Request Needed).
semi@jengland.info -- FaceBook


RoastedRedPeppers
New Member


Date Joined Jan 2010
Total Posts : 16
   Posted 1/17/2010 7:02 PM (GMT -7)   
Don't take no for an answer and walk away. My HMO said no to Remicade as well. I had 2 fistulas I was dealing with and a flare of my Crohn's. HMO said no and I appealed the decision. I ended up going to their headquarters for the appeal, met with a doctor, a nurse and 2 insurance reps. My doc conferenced in to the appeal, gave them my history - which was long, I won't bore you with the details - and two of the woman in the room were near tears. THey all were pretty much looking at each other in the room like "Whose stupid idea was it to deny her coverage?". I got the call the next day that I would be covered and Remicade dried my fistulas up in a couple months time and put my Crohn's in remission for 3 years. Don't give up!

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 1/17/2010 7:28 PM (GMT -7)   

Keep trying for the Remicade.  It will help you where most others may only do 1/2 the job.  i.e. Flagyl will help keep your abscess under control, but it won't do anything for the fistula.  Did your GI write to your insurance company?  I've tried numerous meds for the same symptoms nd remicade is the only one that helped me.  I felt great for the 1.5 years I was on it, then I developed remicade induced lupus and had to discontinue it.  I am currently on Humira, it is ok, but not as effective as remicade for me anyway.

I wish you all the best, and I hope you aren't in to much pain.

Julia

 


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 1/18/2010 3:15 AM (GMT -7)   
agree... appeal ... or you can walk back and forth with a sign on the sidewalk outside the HMO offices and picket.. always good for news coverage.. or have t shirt made that says " my HMO wont cover my meds " and walk around inside the clinic, or have your dr explain that he is prescribing you this medicine and any detrimental effects for not recieving it will be borne by the HMO and get a lawyer to write the same letter
randynoguts 



     http://www.geocities.com/randynogutsweb/


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3432
   Posted 1/18/2010 12:11 PM (GMT -7)   
That's awful- although I've been on Remicade for nearly the past 3 years, & it's done nothing to close my fistula. Kind of a disppointment. Am now on Humira, but not expecting that to have any luck re. fistula either. Surgical closure is about all I can hope for, & the surgeons I've met with have told me the success rate is pretty low. While the tnf blockers definitely helped with the UC symptoms, they've done absolutely nothing to close up the fistula. I'd call the Remicade people & look into that Remistart program, or also check out needymeds.org.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- from 4/07 thru 1/10
Humira- started 1/10
Imuran- 150mgs/day
various probiotics & fiber supplement
 
 
 


Ashyla03
Regular Member


Date Joined Oct 2009
Total Posts : 41
   Posted 1/18/2010 12:55 PM (GMT -7)   
my mother-in-law is a nurse & she always wants me to take remicade & she said if you cant afford it can get it free.  I'm not sure but I could contact either remicade or the hospital in your area.

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 1/20/2010 3:56 PM (GMT -7)   
Update, peoples!
Apparently, the reason why the HMO refused my Remicade is because I haven't been taking any maintenance meds in the last 10 years. Therefore, they want me to take oral medication, i.e. Lialda, even though my GI explained to them that it was ineffective against a fistula. She was quite POd over the whole mess, since she's the one who really pushed me into accepting the whole Remicade idea in the first place.
I guess I'm being punished for not being sick for so long.
I think she's going to send me some samples. I'm really not sure how much it's going to cost me. I know I have really good insurance here and my insurance card says prescriptions are $7/$35/$55 for Tier I/II/III. Is it too much to hope for that the price of the lialda will fall in one of these categories?
Also, should I still get the card from the toll free number?
Does anyone know the side effects of lialda? I'm taking flagyl right now and it makes everything taste so bad. blech The website says lialda causes headache for the most part, but I want to hear about someone's actual experience with the drug. I might try prowling in the UC forum.
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
My HMO refused the Remicade and now I could be going on Lialda or sulfa? blah


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 1/20/2010 5:36 PM (GMT -7)   
I have been on Lialda since saturday and so far for me, so good. I don't seem to have any immediate side effects and while I have had to get to the bathroom quickly a couple of times, it isn't as often as before. I think these meds take several weeks to reach their full effect though.
Your doctor should have one of the Lialda cards. Mine says "Shire" on the front and on the back it says "powered by McKesson." Also on the front it says Don't pay for than $10. I hope you can find one of these. Looks like there is a free trial offer of it on our website here! lol.. At least it comes up on mine. Good luck to you. These insurance issues are just too much sometimes. All my "disposable" income goes to medications now but we gotta do what we gotta do to get/stay well.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma, IBS, asthma/allergies,
low thyroid,claritin, advair, singulair, diovan, progesterone, lialda, VSL#3 probiotic, Vit. D

Blood test positive for Crohn's via prometheus ibd serology panel


BensMom
Regular Member


Date Joined Mar 2006
Total Posts : 57
   Posted 1/21/2010 7:05 AM (GMT -7)   
Hi,
 
My son was on Lialda for almost a year and had absolutely no side effects.  He did end up with an elevated bilirubin level, so his GI took him off the Lialda for the last 6 weeks to see if his bilirubin would decrease.  However, he just had another blood test and the level was still high, so that probably was not caused by the Lialda.
 
Best of luck to you on getting the Remicade approved.  We just switched insurance companies and are now fighting with the new one to get Ben's Remicade approved even though he has been taking it for almost 2 years with proven results.  It's just crazy.
 
Take care,
Nancy (son Ben, 15, CD dx 3/06)

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 1/21/2010 12:25 PM (GMT -7)   
Yes, these drugs have side effects. My doc started me on a drug with one of the better safety profiles (colazal) but when that didn't work, we had to go to Lialda. I hope it will work for me. It is bad that we have to take meds that may give side effects AND they don't work!
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma, IBS, asthma/allergies,
low thyroid,claritin, advair, singulair, diovan, progesterone, lialda, VSL#3 probiotic, Vit. D

Blood test positive for Crohn's via prometheus ibd serology panel


gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 4/21/2010 5:28 PM (GMT -7)   
More update-y goodness!
So I've been on Lialda for almost three months now.
Absolutely zero side effects.
For one month the fistula kinda sealed up, but then it ruptured again and now it hasn't gone over 3 days without some kind of drainage coming out.
I have felt less fatigued on the Lialda.
My doctor says it is because Lialda treats the Crohn's disease, so maybe my body isn't fighting as hard against itself.
Also, I got the results back from my Prometheus test and apparently I do not have any of the genetic markers for Crohn's Disease. That is not much of a shocker considering I'm 4th generation multi ethnic and I doubt they could find someone with a genetic make up similar to mine except my kin and none of them have Crohn's.
My GI said the prometheus test results were probably another reason why the HMO refused to approve my Remicade.
In the meantime, I went to see a general surgeon and he poked around everywhere quite thoroughly and looked at the xrays from my fistulotomy. He said that the fistula ascends to high up, almost to the top of the rectum and that if he cuts this one out, 10 more will come in its place. Therefore, surgery is not an option for me.
SO
Once again, my GI and I are going to try for Remicade. She sent out the referral on Friday. If I hear back soon, I'll be approved. If I don't hear back, I'm not approved. I was feeling really optimistic and glad that I was finally going to get this crazy drug, but then this happened.
My department is reducing me to part time for the Fall semester.
This means that my contract will end in late June and not resume until September.
I will be without insurance, unless I go the cobra route, for July and August. Bye bye, my GI. Bye bye, my remicade? We shall see what happens.
As a result of all this, I don't know what to hope for anymore.
If I'm not approved, then I won't have to lose it in July or go broke trying to pay for it.
If I am approved, then I take it, but I may have to stop it and once you stop it, that's it, right?
Somebody tell me the good news.
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
My HMO refused the Remicade and now I could be going on Lialda or sulfa? blah

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