Correct dosage for Lialda??

staying at the high dosage 6mo to a year and then tapering to 2.4g if in remission - that is what I hear.

I slowly get better, but no remission, so I've been on 3.6g for almost 3 years.

getting better than flaring while on 4.8g is not a good sign. it may be tme for some additional measure to get off Pred. There are several alternatives people try, but hard to know with alternatives. The next step in standard therapy is 6mp.

herbgarden, why no rectal meds?

Your son should come to this forum himself!

teenagers, ugh. and yes, a 20 year old young man who refuses things that are essentially going to help him is acting like a teen.

Ok. It is true that many meds come with unfortunate side effects. Mesalamine is not one of them, however, while prednisone is a terrible choice of medication. Prednisone has awful long term implications and for a young man to choose that over safe mesalamine is just poor decision making. You and he can use the web to read research papers on rectal mesalamine. You will find that it is extremely effective at maintaining remission for people with UC.

Oral meds (like Lialda) are useful in treating inflammation in the colon from the terminal ileum up to the sigmoid colon. Beyond that they are not effective. That's why rectal mesalamine retention enemas are such a good tool for people like your son. Since UC seems to start at the rectum, you should focus your efforts on treating the rectum and sigmoid colon. You can take a boat load of Lialda and it just won't get there.

Your son tolerates mesalamine well based on his continued usage of Lialda. If he were to try a month of nightly retention enemas to see how they worked he would be pleasantly surprised. And he wouldn't have to take the [mood altering, bone density damaging, acne inducing, hunger-inducing] prednisone.

Sorry about your son. It may be worth trying a different asa med like Apriso or Asacal (if your son is not ready to go to immunosupressants--which I don't blame him) Sometimes I hear that it can make a difference b/c they all work slightly differently. I think the transdermal LDN is also a good idea to try again. Finally I would def make a case to him to at least re-consider the rectal meds. I know it can be tough to wrap your head around but it can make a very big difference since the UC starts at the very bottom and the oral meds do not reach there very well. At least it may be worth a bigger conversation.

Also does he take any probiotics? That helps some as well. I know you mainly asked about Lialda dose, but hoping some of these things he may consider. Hey what if they work well and he feels alot better? You can always go to surgery at a later time. Good luck and hope your son feels better soon.
B

hateuc: Thanks for the suggestions. He has taken Asacol in the past and when it stopped working, he started on Lialda. However, looking back he probably never took enough Asacol to be effective. Rather than adjusting his dosage, the new GI just switched him to Lialda. I do believe the LDN will help him and as soon as he is off of the Prednisone, we are going to give it a shot. I am going to push really hard for him to try the rectal meds. I honestly believe that it will make a difference. If I were the one with UC, I would try anything (well almost) before having my colon out, and that includes enemas. Yes, he does take probiotics. He hasn't done them consistently enough for me to see if it has helped or not.

Garylouisville: Thank you, I was just noticing that a lot of people were taking 2 Lialda per day and it just scared me because he has been on 4 per day since June. I wasn't sure if the higher dosage could be taken over a long period of time or not. I once read that Asacol and Lialda shouldn't be taken for more than 2 months. (read that on the prescribing information that comes with the medication). Yet I hear of people who have been on it for years.

I take Lialda and when I was first diagnosed I was put on 4 per day and stayed on that much for over a year. I agree that the enemas would be very helpful for him.

Hi Quincy
He is taking the Lialda all at once, in the morning. His symptoms were stomach pain, bloody bm's 8 to 9 times per day. The prednisone quickly got things to a more manageable state. As of now he feels so much better and is having maybe 3 or 4 bm's per day and no blood. Probiotics are a must!! He is supposed to take them all at once, right??

What Natren probiotics is he taking exactly?

He's using URSO? has he been diagnosed with PSC?

How much vitamin E is he on and why?

How much Selenium.

q

quincy said...
What Natren probiotics is he taking exactly?

He's using URSO? has he been diagnosed with PSC?

How much vitamin E is he on and why?

How much Selenium.

q

He is no longer on Natren probiotics. He is taking VSL#3 sachets,
Yes he is on Urso, not definitively diagnosed with PSC yet. He is on Vitamin E 400IU. He was low in Vitamin E and his doctor recommended it as part of a liver antioxidant protocol. He also takes 400mcg of Selenium daily.

pmedic - I thought the really bad side effects from prednisone was after one had been on it for months and months or even years. I had no idea it could do that kind of damage after a few short courses of treatment. I hope your surgery goes well and your Crohn's will behave so that you can be as healthy as possible when you have the surgery. Thanks again!