Thoughts on Lialda?

Lucy_B · Post by **Lucy_B** » Tue Sep 15, 2015 5:03 pm

Hi, everyone! I saw a new GI doc today (a really awesome and thorough one, yay!) who has suggested that I try Lialda. I explained that I don't like the idea of resorting to budesonide (bad reaction to steroids in the past), and he seemed likewise hesitant to try that as a first line treatment for the inflammation. He wants to see if mesalamine will help first due to the reduced side effect profile, etc. Can anyone share your experiences with this drug? For those who have had success with it, about how long did it take to start working for you? I am not in any pain right now and am having 2-4 semi-formed BM's per day (thanks to Imodium). My biggest issue is weight loss/inability to gain. No matter how much I eat, I cannot seem to put the pounds back on. I am hoping that Lialda will help me do this. Any thoughts? Does it help the body to better absorb nutrients? Thanks in advance!

Lucy_B · Post by **Lucy_B** » Tue Sep 15, 2015 5:06 pm

P. S. This stuff is also EXPENSIVE! Just got a call from my pharmacy who informed me that my co-insurance will be $364 for a 60 day supply...wowzers. Does anyone have tips for reducing the cost or know if the pharmaceutical company offers discounts? Thanks!

dfpowell · Post by **dfpowell** » Tue Sep 15, 2015 7:17 pm

Lucy,

I tried it for 9 months and it did not help me. I was up to 4800 mg and getting worse, so I discontinued it. We are all different, so perhaps it will help you.

ponywoman · Post by **ponywoman** » Tue Sep 15, 2015 10:03 pm

Lucy, the budesonide stopped my weeks of explosive D within a couple of days! But I had to undergo the huge expense of taking Apriso for months first which was worthless. My GI wouldn't prescribe the budesonide for me until I was in the ER & I think phonecalls from the ER doc embarrassed her into prescribing it finally for me. I was taking a low 5mg of prednisone daily for RA so that was their excuse. I've read only 20% or so of budesonide is metabolized systemically. The prednisone did not help with D...

My cost of budesonide is $385 monthly but am in donut medicare hole now so only $100 last time filled. Am thinking of ordering from India?

I only gained weight by drinking eggnog during Holidays as I was a 70# skeleton when in ER. Now only 85 & the muscle is all gone & still look like skin & bone. Help! Any weight gain ideas, anyone? I even tried making my own eggnog but didn't work. I was very muscular despite rheumatoid arthritis as I worked outside daily on our horse farm... Can't lift a loaf of bread now after the scourge of CC hit me in April of 2014. Please if anyone knows of a weightgain supplement or something to help Lucy & me!

Post by **tex** » Tue Sep 15, 2015 10:13 pm

Here's a link to generic mesalamine from India:

http://www.alldaychemist.com/mesacol.html

But I agree, budesonide is a far more effective medication for MC, and the copay is approximately the same as melsalamine in the U. S.

Tex

TREESE · Post by **TREESE** » Wed Sep 16, 2015 2:46 am

Hello, Lucy and Pony Woman - I have been on LIALDA a few months now. My issue was always weight loss and the inability to gain it back. I was thin to begin with and since the CC, I'm down to 90 lbs. At 5' 6"" and with Osteoporosis, it IS a concern.

I was taking 2 LIALDA Pills a day. Not bad, but still not right. Now, I'm up to 4. I did get more stable with the weight, but still wasn't gaining. Just not losing anymore.

For weight, I was trying to make Hemp Milk in the Blender with a chunck of Banana in it, for extra calories. And I tried using Rice Milk instead of water in my morning Cream of Rice cereal. Plus, I ate like every 2 hours. But all that was just maintaining me without bringing the diarrhea back.

Sadly, last week I got some weird viral or bacterial infection and Everything is just OFF again... I may try the Budesonide myself at some point if I can't get back on track soon. Keep me posted with how you're doing, ok? Thanks!

TREESE

Lucy_B · Post by **Lucy_B** » Wed Sep 16, 2015 1:53 pm

Thanks for the info, everyone! And so sorry to hear about your latest resurgence of symptoms, Treese- that's a bummer. :( Are you starting to feel better now? For what it's worth, I did manage to get a hefty discount on the Lialda by requesting a pharmacy savings card via their website. It was easy peasy and saved $240. Score! My doc wants me to start on 4.8 g/day...that's the highest dose, right? I'm going to see if he might be amenable to starting lower and titrating up. Any thoughts on that? I'm so underweight right now and taking the highest dose of something right off the bat seems a little scary. But maybe it's what I need to do, hard to say. Looking forward to seeing how this goes and reporting back!

Lucy

Gabes-Apg · Post by **Gabes-Apg** » Wed Sep 16, 2015 2:01 pm

I'm so underweight right now and taking the highest dose of something right off the bat seems a little scary

.

Lucy
my advice when starting anything new, be it; medication, supplement, food is start out really small and gradually work up to full dose...
dont put your gut into shock.

you can discuss a start low and tritrate up plan with the doctor but it is likely he will look at you like you are an alien...
as sadly they struggle to understand how delicate our bodies are when MC is involved...

are they tablets or capsules?

armstrongpilot · Post by **armstrongpilot** » Wed Sep 16, 2015 2:48 pm

my doctor gave me a card for lialda that reduced my copy to $50 a month. Try that?? They might have a online website with card or coupon that you have to activate. Weight loss is a problem for me as well since june 2015 I've lost 25lbs or so. I eat 6X a day now/ never hungry and cant put anything on....then I have a few bad days and lose more. It is so consistently draining on me. lialda didn't seem to help me

jessers11581 · Post by **jessers11581** » Wed Sep 16, 2015 8:44 pm

Lucy_B · Post by **Lucy_B** » Wed Sep 16, 2015 8:51 pm

Thanks, folks! Gabes, looks like these are giant tablets. Sorry Lialda didn't work for you, armstrongpilot! Fortunately I have a hardy appetite and am eating plenty of calories- just can't seem to use 'em. Guess we'll see how things go for me with the mesalamine...here's hoping.

Gabes-Apg · Post by **Gabes-Apg** » Thu Sep 17, 2015 2:28 pm

if they are tablets then there is a good chance that you can cut them into quarters so you can start on low dose and work up gradually

i would start with 1/4 tablet, once a day for 3 days..... if no issues after 3 days, go to 1/4 tablet twice a day for 3 days... if things are AOK, then try to 1/2 tablet in the morning, etc etc if during the increase you start to get symptoms, go back to the dosage level where there was no issues for another 3-5 days, then try to next increase again...

Lucy_B · Post by **Lucy_B** » Thu Sep 17, 2015 6:57 pm

Thanks, Gabes! I checked in with my doc and he explained that he wants me to start at the full dose so as to evaluate my response sooner rather than later. His thinking is that if it's not going to work, he'd rather know quickly so I don't have to spend too much time on it. He insists that this is a med with a very good side effect profile, so I guess I'll just try it and see what happens. Obviously if I have a reaction, I'll let him know and we'll take it from there. I do really love this new doc I'm seeing (FINALLY). The man spent like an hour talking to me about my entire medical history, and he is someone who really knows his stuff (as the head of the gastroenterology division of a teaching hospital). We even talked at length about natural approaches, how diet factors into the equation (specifically gluten), etc. He is fantastic, and I'm super grateful I've found him. That being said, I do agree that "low and slow" is typically the best way to handle new meds. I'm sure if I were to push back on it, he'd be willing to let me try whatever I want. Hmmm. Decisions, decisions...

ponywoman · Post by **ponywoman** » Fri Sep 18, 2015 12:10 pm

Lucy, your good Doctor is right with this drug. At 70# last year-- or less-- after weeks of watery D after being diagnosed with CC, my GI finally put me on Apriso which is the same as Lialda. Apriso is capsules which one takes 4 of at once, which is a total of 1.5grams. Can't say it did much for my Colitis but the only side effect was gas/farting! Have never had a problem with this & have had no problem since quit taking the Apriso. If it stops the colitis for you, you can handle this side effect by taking the drug late in the day or evening. This year I also took sulfasalazine for rheumatoid which is similar to Apriso but with way more side effects. I quit taking both drugs (didn't take both at same time) when I got a rash & a severe myasthenia gravis like muscle disease. Both drugs are sulfa based & frequently can have a rash as a side effect. Now convinced that the sulfa drugs had nothing to do with either the rash or the new muscle disease.

Glad you were able to find a reasonable price. I was going to post that if you would email me your address, I'd mail you an almost full bottle of Apriso which cost me $235 because I was in the Medicare donut hole. Cost only $40 for me early in the year.

Don't think you'll have any problems with this drug as I didn't at 70#. It just didn't work for me but it does for lots & lots of folks! Good Luck! Marsha/ponywoman

Lucy_B · Post by **Lucy_B** » Fri Sep 18, 2015 1:28 pm

Aww, you're so sweet! Thank you for the offer! Yeah, I was thinking the same thing myself- i.e. that if this drug doesn't work for me, I'd love the opportunity to give it to someone else. I have two giant bottles' worth and these pills ain't cheap.