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Probably have to switch oral Mesalamine

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Ulcerative Colitis
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Posted 4/8/2014 1:44 AM (GMT 0)
Looks like insurance is no longer going to cover my Lialda. That sucks. I switched from Asacol HD to Lialda and Lialda has done me better. It looks like my top two choices are:

1. Go back to the Asacol HD which I took before. It did OK but Lialda did better. The highest prescription available is 2.4 grams per day, which is the dosage I was taking for Lialda, a maintenance dose. This is a tier 3 drug.

2. Switch to Pentasa 500mg which I have never tried. Highest prescription dose available is 4.0 grams per day so this gives me some leeway if I should get worse and need a higher dose. This is a tier 2 drug. Worried about the unknown of never having been on it.

There are a couple of other options but those are worse than these two. Any opinions?
Posted 4/8/2014 1:59 AM (GMT 0)
Hi Gary,
Can you get your Dr to write you a letter to appeal and get Lialda covered? Hate to change a semi winning formula especially if you haven't done as well on Asacal hd. I thought that Pentasa was more for Crohns. Just saying.
B
Posted 4/8/2014 3:24 AM (GMT 0)
It's too bad you can't keep going on lialda if it's been working well for you. Did you consider Apriso? Some people have great luck with it. I guess if 2.4g is the dose that's working for you, maybe you will do well on Asacol HD 2.4g but what if you flare up? You can't get a higher dose covered? That would worry me. So frustrating that insurance companies play these games.
Posted 4/8/2014 1:17 PM (GMT 0)
Doctor has already tried for me. The doctor's office called yesterday and said that the insurance company refuses to approve Lialda. Not on their formulary. Stupid thing is that, as far as I know, Asacol and Lialda both cost them about the same amount so it's not like they are going to be out more money. Apriso is one of the worse options. The highest dosage prescription available would only be 1.5 grams per day and I'm taking 2.4 now. They won't cover a higher dose of the Asacol. I was hoping someone would chime in who has experience with Pentasa. I don't know much about it.
Posted 4/8/2014 1:22 PM (GMT 0)
Apriso is a much lower dose, but it also supposedly dissolves/distributes more effectively in the colon, so I wouldn't say it's worse just because the dose is lower. I had been taking 4.8 g of "old" Asacol when I switched to Apriso, and I didn't even have a blip. I didn't realize how much lower the daily dose was at the time, otherwise, I might have been nervous.

That said, if I get into a flare and can't get symptoms under control quickly by upping enemas to nightly and trying VSL#3, I'll have my GI switch me to something with a 4.8 g daily dose.
Posted 4/8/2014 1:50 PM (GMT 0)
I took Pentasa for many years and liked it. It is active throughout the digestive tract and so may have more side effects than the ones active just in the colon. It's really expensive and I find it surprising that your insurance company would make that choice. Stupid insurance companies.
Posted 4/8/2014 2:00 PM (GMT 0)
I have Pentasa now and then as a supplement to Lialda. My anatomy is altered and we are not exactly sure where the Lialda coating is wearing off. The pentase looks to dissolve early.
Posted 4/8/2014 2:09 PM (GMT 0)
I can recommend Pentasa, it seemed like an odd option considering I have left UC, but its working a treat for me, I think I am in symptomatic remission, and I have had no side effects...I started taking it early Feb, and I have only had a couple of bad days, when I ate something really silly.
Posted 4/8/2014 3:57 PM (GMT 0)
I too would see if your Doctor could do a letter to your insurance asking to keep covering it since it really is doing better for you. I can't offer advice on the other meds as I've only ever been on Lialda and rectals and pred twice.
Posted 4/8/2014 4:22 PM (GMT 0)
Have you tried balsalazide / colozal
Posted 4/8/2014 4:52 PM (GMT 0)
I switched from the max dose of Asacol HD to Apriso, and I am doing great! I was basically in remission already when I switched, though. I noticed that my stools were more formed and I was going less often, even though it is a lower dosage. I believe some ppl take it twice a day as well.
Posted 4/8/2014 5:30 PM (GMT 0)
Thanks for everyone's suggestions. Sometimes it really sounds like a crapshoot which mesalamine works better in which individual. The doctor's office has already talked to the insurance company to try to get Lialda approved but finally gave up. I'm trying to get an appointment with my doc soon to go over all this as it has turned into a big mess between me, the insurance company, and the doctor's office. I'm stuck in the middle with Canasa and generic Levsin as well, not just the Lialda. Lialda and the generic Levsin is not on the formulary list whereas Canasa is a tier 4, requiring preauthorization. The insurance company filled all three the first time this year, saying they will not cover again but I did reorder both the Canasa and the generic Levsin a second time and the insurance company filled them. I haven't reordered the Lialda a second time yet but the doctor's office claims the insurance company has told them that they would not approve any of the three again.
Posted 4/8/2014 7:09 PM (GMT 0)
I just hate these insurance companies! I pay a small fortune for my coverage and it is total crap. I wait at leAst 30 minutes to get a not so knowledgeable representative on the phone. It didn't used to be this bad, at least not for me. I feel your pain. Good luck in dealing with these people.
Posted 4/9/2014 4:04 PM (GMT 0)
I was on Pentasa 4mg/day from initial diagnosis last August (2 tabs x 4 times), down to 3mg/day in November until recently. I had a good reaction to it with no side effects and it stopped the bleeding in days when first diagnosed (had been bleeding for three months so a quick response I thought). I found it an effective drug on my symptoms. I also was using a nightly 4mg enema.

I changed my GI recently and he changed me to Salofalk granules. He said Pentasa is designed to release in the right side colon and as I have left sided UC, he wanted me to use the granules as they are designed to travel further in the intestine. I have subsequently had a colonoscopy and could see the granules quite clearly so they are definitely making their way to the appropriate location. Not on them long enough to see if there has been an improvement or even a change.

Good luck with your insurance battle.
Posted 4/9/2014 5:00 PM (GMT 0)
caycro:

Thanks for your post regarding Pentasa. I find it curious that you said, "I found it an effective drug on my symptoms" followed by the fact that your new GI basically said that it was the wrong drug for you to be on and then switched you to Salofalk granules and then you ending by saying, "Not on them long enough to see if there has been an improvement or even a change". From someone on the outside looking in I would say that the Pentasa did more for you than the Salofalk granules are.
Posted 4/9/2014 5:44 PM (GMT 0)
I must say I thought the same as Gary!...have you ever heard the expression "if it isnt broke don't fix it"

Also I am taking the Pentasa granules, not the tablets.
Posted 4/9/2014 5:51 PM (GMT 0)
garylousville: I've only been on the granules for a couple of weeks now and I have seen no change in my bowel patterns - hence my comment re no change.

As for improvement : my initial colonoscopy showed my inflammation to 40cm, that is now down to 20cm and the new GI felt that the salofalk granules are proven to be more effective that far along the colon. He said that although the Pentasa had been effective so far, it was designed to release in the small intestine/right side of colon and it would likely not last to the end of the colon where my inflammation is now residing. The colonoscopy showing the granules proved that they are lasting that long in my colon. I am hoping to have the inflammation reduced further following this change in meds.

My change in GI was not brought about from anything other than it was geographically required, my previous GI was based in another country where I was living then and where the medical system is a little less advanced/less progressive than in my home country. However, in both countries insurance plays no part in the choice of drugs prescribed or open to you, they are all equally covered. I'm realising more and more on here how lucky I am in that regard.
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