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

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???

I hear the side effects are mostly headache and diarrhea.

Any opinions?

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.

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!

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

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.

http://www.needymeds.org/resourcepages/crohns_colitis.shtml

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.

http://www.patientadvocate.org/

Good luck!

 

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!

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.
If I was in your shoes, I'd think of trying the suppositories while fighting an appeal. Best of luck whatever you do !

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

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

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.

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.

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)

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.