Medication question

[farfalle5]

Hello
My daughter was diagnosed last year with crohns disease and is 8 years old.
The only medications she has been on for it is Prevacid and the generic brand of prednisone. The dr put her on Asacol which now she started to take it because she did not know how to swallow the pill. So my question to all of you is what meds are your children on and for how long. My daughters GI dr wants her off the prednisone asap. I just wondering if Asacol will work and if not what are other alternatives. Her dr mentioned 6mp but the little I read on it I am not willing to go that route. Thank you all for your time in reading my post. Julia

 

[Sascot]

Hi, my son is just going onto the 6mp this month sometime (waiting for them to phone). I'm afraid there's not much to "choose from" when it comes to meds. It depends what the symptoms are as to what the docs seem to choose. Over in Scotland the Aza and 6mp are the first line for treating Crohn's before they will try anything else. As far as I remember, our GI didn't have much to say about the 5-asa's. He moves onto Remicade after the 6mp I think.
I fought and fought not to have my son go onto the 6mp (really don't want to do it) but he has a peri-anal abscess so he needs some sort of treatment and this is it at the moment.
I believe the LDN is starting to become more popular (they are only just starting to study it for paediatrics over here) and seems to be a good choice if your doctor will agree to it - but again depends on symptoms/severity.
Good luck - these are never easy choices.

 

[Jmrogers4]

My son was on Imuran (aza) for several years, which is similar to 6mp. The biggest issue is getting the inflammation under control so you do not have ongoing damage being done.
He was also on methotrexate but had a severe reaction and can not take it.
My understanding of Asacol is it is like tylenol made to release at the "right location" but there are other that are a lot more knowledgeable than I am who I'm sure will be along shortly.
My son is now on LDN, we have seen great results but you have to do what is right for you and son. As others have said it could be a challenge to obtain but what we know at this point is there are very few side effects.
One thing to remember is the chance of possible side effects is very minimal and that serious damage could be going on and the number one goal is to get them into remission so that they can grow and develop normally.
Sending you loads of support as you find what works for you.

 

[my little penguin]

First :hug:

Prevacid is not really used to treat crohn's .
It was probably given to keep the pred from hurting her stomach .
Asacol is a 5-ASA. It was designed for ulcerative colitis since it acts like a creme on the surface of the lower large intestine . It is not very effective in crohn's since crohn affects all the layers not just the surface.
However as you stated it is very benign in side effects some gi's like to use the step u

 

[my little penguin]

Up therapy .

Most effective drugs for crohn's have a long list of scary sides.
But when they are effective they can stop or slow the progression of the disease.

Untreated or under treated crohn's can have devasting results sometimes deadly ones.

There is no cure for crohn's.

Your child will be on drugs for life unless they come up with a cure.
Your child will stay on whatever drug works until it stops working or becomes toxic .

There is no right path - just whatever drug works for your child.
Everyone has a different experience and what works for one child may not work for another.


My DS started on pentasa . I did not want him on 6-mp ( btw no ones does).
But he failed pentasa after a month. He stayed on 6-mp for 8 months but it keep going to his liver. Methotrexate for two months which did not work.
He is now on remicade which is working well.
He also tried exclusive enteral nutrion - no food only formula for a while .

 

[farfalle5]

Thank you for all the responses!

 

[Devynnsmom]

Hello and welcome to the forum. My daughter is 11 and was *unoficially* diagnosed in Dec of 2009 with Crohn's disease. She was put on Pentasa ASA at that time. It worked well (had to up the dosage a few times in between)but she began flaring in 2011. She was given another upper and lower scope and her diagnosis was changed to Ulcerative colitis. She was switched to Mezavant in Mar 2012. That didn't work, so she was switched to Sulfasalazine in Nov 2012. So far, so good. Things are getting a bit better.

 

[DustyKat]

As mlp has said the 5ASA's, if they are going to be successful, are heavily dependent on disease location and severity.

The idea at the outset is to try and achieve remission as quickly as possible and then maintain it.

Prednisone is mean't to be a short term hit it hard drug, hence the doctors desire to complete its course. An average length of time on Pred would be 8-12 weeks from initial dosage to completion of ween. The doctor will be hoping the Prednisone induces remission and what should then happen is whatever other drug/s, e.g. 6mp, is chosen it will take over when the Pred is finished. The key here is to commence the drug before the Pred is finished as drugs like 6mp can take up to 3 months or longer to become fully therapeutic.

There are two main theories at present: Top up and Step down. This posting is lengthy but is a fab read about the varying drugs and their role in Crohn's plus a discussion about these two theories:

http://www.crohnsforum.com/showthread.php?t=11132

As has been said, the response to treatment for this disease is just as individual as the disease itself.

If there are two pieces of advice I could give it would be:
1. Never underestimate this disease. The side effects of the drugs are scary but so is untreated or under treated disease. People will dwell on the extreme side effects of these drugs and that is a natural and just thing to do but little is spoken of what this disease is capable of if inflammation is left to simmer and fester away. Believe you me it is not pretty, I have been there. It is not my intention to scare you by saying this, I merely wish to present a balanced discussion.

and

2. No matter what the treatment you choose for your daughter never hold to it so tightly that you are unwillingly to let it go when its time has passed.

Dusty. xxx

 

[Wooddy]

Julia,

I too agree with everyone that has responded to your post. I know it must be difficult experience to deal with -- we all went through it when we were diagnosed. It must be particularly difficult when you have to watch your child suffer through it and I sympathize with you. The fact remains that there are only so many effective treatments available so the goal is to choose the one that does the least harm.

Prednisone is somewhat of a wonder drug but the catch it is that it kills you while it is saving your life. Short-term use of prednisone (3-4 months) is tolerated much better than long term or repeated use. If you don't get your child on 6-mp/azathioprine then your child will be on prednisone longer, and recurring attacks will be frequent. In fact, the last thing you want to do is to keep using prednisone to control your child's recurring flares. Among other things, long-term use in children can lead to stunted growth. The more your child is on it, the more harm it does and the harder it is to get off it. Yes, I agree the side effects of 6mp/azathioprine look somewhat scary but keep in mind that they are much better than the alternative. The use of 6-mp/azathioprine is a much better option for long-term treatment because they are effective for maintaining long-term remission in pediatric Crohn’s patients thus keeping your child’s prednisone exposure to a minimum.

The idea behind giving prednisone first is to induce remission until drugs like 6mp or azathioprine start kicking in. So it would be in your daughters best interest to get her started one of those as soon as possible because they take a longer time to start working.

The link below will take you to a study that demonstrates 6-mp/azathioprine is associated with maintaining first remission in newly diagnosed pediatric patients. You can download the study in PDF format for free if once you get to the page you follow the links.

http://www.ncbi.nlm.nih.gov/pubmed/16954801

I hope we have offered enough support to help you get through this and wish a speedy path to remission for your daughter.

 

[farfalle5]

Thank you for your replies I have alot to learn

 

[QueenGothel]

We did the bottom up approach with Asacol and then moved onto Canasa suppositories and then Sulfasalazine then to Remicade. It was a rough.

Predisone only works for so long and you really don't want to use up it effectiveness. It didn't take long weening her a few times until we saw all of the bad side effects and none of the good effects. Asacol is very specific and for us should have been completely tailored for her specific disease. Unfortunately my daugther got the rare side effect of rectal bleeding caused from them. Unfortunately this rare side effect is not so rare in the pediatric world and the Predisone can mask this side effect and keep you thinking optimistically until the ween begins.

The point of the top down approach was best described to me by a friend whom has Crohns. She said doctors choose the top down approach bc they can see the results without waiting months to determine if it is working. The goal is to achieve remission as fast as possible and avoid more scarring. The more inflamed, the more scarring, the more scarring, the more narrowing that can occur and the more narrowing the sooner surgery would be needed. This is the reasoning that made the most sense to me.

Granted some people do do the bottom up approach like I tried and devynnsmom achieved. It is such a tailored disease and hard to know what will work based on tests alone.

 

[Jmrogers4]

Myreinhard, love the new avatar and cute family picture :ysmile:

 

[Johnnysmom]

You have gotten some great advice so far. The only thing I would add is that the quicker you get this under control the better chance you have at achieving remission. If you choose to try the 5 ASA drugs for a few months and they are not strong enough, it is that much harder later for the 6mp to work. Unfortunately we all play the percentages. No one knows what this disease will do. You could have remission for 10 years or need surgery in a few months by using the same drug. So you look at the odds of getting a bad side effect from a mid level drug like 6mp vs. the chances of getting damage by under treating with a drug like a 5ASA. The odds are in your favor with the 6mp. It isn't a very good way to make a medical decisions but that is what it comes down to. I do not know the specifics of your daughters case but crohn's disease at 8 years old means that the disease is unlikely to be mild. (my son was 11 at diagnosis). I would also take the advice of your G.I. into very serious consideration. They have seen years of treating this disease in many different ways and have seen this first hand. When I told my G.I. I wanted my son on a 5ASA drug he told me it was like treating a brain tumor with aspirin.(His exact words) It was hard to hear but I am glad he came out with it and told me what he thought.

I am sorry you are going through this. It is so hard in the beginning. But you adjust and things get much better. I think I cried constantly for the first two weeks. ((((Hugs)))))

 

[AZMOM]

Julia - I told a friend once that treating crohns was like choosing between the witch and the devil. Some days there just is no perfect choice and as you have already learned, no guarantees.

The advice and viewpoints below are great. What works for one is an epic fail for another. So frustrating!!

6MP kept my daughter in remission for about a year and them we had problems and had to stop. For another in the pediatric support group we attended, she was in remission for 6+ years on 6MP without complication. You'll find similar variances around here.

You'll find the right course for your baby. Just remember that the idea is to preserve all the GI tract you can and prevent the damage as much as you can. These little bellies have years and years to go.

Hugs and welcome -

J.