Thoughts on Remicade vs 6MP?

[Mehita]

I'm preparing for our next GI appointment and am looking for thoughts on Remicade versus 6MP as a maintenance med for DS. I'm really at a loss as to which way to go, but I fully accept that we need to do something. Tackled that mental monster finally!

Brief history: Dx in 2008, went untreated (long story, don't ask :ymad for 3 years aside from starting a gluten free diet for confirmed Celiac. Low chronic inflammation eventually created a scar tissue stricture which was removed this past January 2013. Prior MRE's (Oct 2011, Dec 2012) showed no Crohn's activity aside from the strictured area.

Today:GI said at 6 months post-op, we should consider either Remicade or 6MP to maintain remission. We're at 3 1/2 months post-op and starting to see signs of possible flare (diarrhea & urgency, no other symptoms). Trying to get an appt for this week with GI. I know he's going to want to start either Remi or 6MP, but has essentially left the decision up to us. DS's TPMT result was a 17.

Note:Studies have shown that Remi has a better remission rate for post-surgical remission.

I really have no idea which way to go. Any benefit of one over the other? Should we stick with the bottom up approach and at least try 6MP first? Or just go straight to Remi with the better remission stats?

DS would be compliant with either one and says he has no preference.

It's times like this that being a Libra really stinks!

 

[Clash]

I think opinions would be shaded by the meds each member has already utilized. We had to go straight to Remicade so althought in the beginning it was scary now not so much. But the thioprines do give me anxiety because we have never had to utilize them. On the other hand, Dusty's kids have been on AZA the whole time so she is probably more comfortable with it.

I do agee that Remicade has proven results after surgery, do you know the statistics for 6MP after surgery, that may help you decide too.

I believe Jennifer had surgery then remained in remission on 6MP for years, maybe tagging her will bring her by for her experience.

I know these decisions are so hard I do hope whatever your choice it works for a ling standing remission.

 

[Tesscorm]

So tough... :ghug:

We also went straight to remicade.

When Stephen was still with his ped GI, he had mentioned the possibility of mtx a couple of times but it never became more than a 'possibility'. When I asked him why mtx and not imuran/6mp, etc., he said that those can create a slightly higher cancer risk if biologics are added (whether together or not) but that risk isn't there with mtx so he preferred to use mtx with teen boys. During another conversation (current GI??), I was told that there was less cancer risk with using only biologics if imuran, etc. hadn't been used (I've since read of studies that have concluded this is not accurate???). Please keep in mind that any cancer risk (increased or otherwise is small - I hate always bringing up cancer risk! ).

I also read one or two studies (probably found them here on the forum) where remicade was shown to be more effective if it was used as the first treatment.

It was clear that Stephen's GI much preferred to use remicade. And, as I didn't have any strong reasons to prefer a thioprine over a biologic, I went with the GI's preference.

Another factor, although much less important, was the convenience of remicade - knowing Stephen would be going away to school, remicade's infusion schedule will be much easier for him.

While I wasn't able to get a second opinion, I did speak to two or three doctors regarding remicade and they all said remicade was the best treatment option.

So, I guess all these 'bits and pieces' eventually took us to remicade.

 

[crohnsinct]

Sorry you are having to make these decisions. My daughter has only been on Remicade so I have no experience with 6MP. I like Clash was very scared of it at first but now it is my best friend. I have a friend on 6MP and she has been on it for 12 years and not one glitch BUT she is an adult and from what I understand IBD in kids is a lot different.

I would choose the one that has a higher success rate and would achieve remission the fastest. The other will always be waiting in the wings if you need it. I am sure the doc will have very specific recommendations and that would weigh heavily in my decision.

One thing though...do not take the decision to do Remicade thinking if you change your mind you could just switch. This is because once you are on Remi, if you go off and try to come back to it later the patient often builds antibodies and can not return to the drug. So if you decide Remicade, just know that you are probably making a committment until the drug fails or a new superior drug comes out or A CURE!

 

[momoftwinboys]

H started on azathioprine as a maintenance med. it did not get him into remission. He started remi on 10/1/12. On 10/2/12 he said he felt better than he had in a long time. Sitting outside his infusion room while he is getting his treatment. His brother and a good friend are in there with him enjoying a movie together. He has gained weight and grown with remicade. He feels great. So far, so good touch wood.
Good luck with whatever you decide upon.

 

[alex_chris]

Just a general question, why did your doc say to wait 6 months after the surgery to start maintenance drugs? I was put on aza 3 days after my surgery back in 2003.

Basically there are actually three alternatives when it comes to drugs these days: aza or 6mp alone, biologics like remicade or humira alone or a combination of both. The combination has the highest chance of putting a patient in deep remission long-term. http://fundapoyarte.org/contenidos/NEJMoa0904492Infliximab y Aziatropina en Enf de Crohns.pdf

 

[Johnnysmom]

Mehita,

My son has been on 6mp for almost 2 years. It has worked wonderful for us. It did take a while to start working and they are still trying to find the right dose. Remicade would start working much more quickly so that would be an advantage.

I think given your sons age the biggest factor would be for me how much his growth has been delayed and what his bone age is. If his growth has been impaired and you feel he is in puberty I would probably go for the remicade. If I thought that Johnny wasn't growing or developing normally I would go for the stronger medication.

 

[Jennifer]

I was on 6MP for a few years before my surgery. After my resection I continued on 6MP for about 13 years. Continued having blood work done once a month (I got used to doing that, was pretty routine at that point). It's really important to have blood work done often in case the medication starts to affect the liver. After being on it for 15+ years altogether it finally started to affect my liver (last year) so I was taken off of it immediately. My levels went back to normal after stopping it. Was a pretty good run for one medication.

I'm still in remission and trying to find a good maintenance med. So far I've tried Humira and Remicade. Both caused a lot of infections for me (not everyone has this issue). The side effects those were causing weren't worth it so I was taken off of both. Now I'm trying Methotrexate which is similar to 6MP where you have to have blood work done often to make sure its not affecting the liver. I haven't been on it for a month yet so I haven't had my blood work done yet. I take it as an injection as my doctor doesn't feel that the pill form is best for people with absorption issues.

For me I prefer the thiopurines over the biologics because I've had fewer side effects with them and staying on top of the blood work is really easy and kind of nice to be able to know when a medication is causing more harm than good right away before it causes major damage. That's just my experience though. Everyone is different.

The choice is completely up to you. They're both great at maintaining remission.

 

[Mehita]

Thanks for the input, everyone. You've got me thinking Remicade might be the better option for DS. The surgery seemed to kick start puberty, but his growth has been significantly delayed. He's not much bigger than his 9 year old brother and DS is 13. I'd really hate to have to introduce pred right now while waiting for the 6MP to kick in.

Good questions, alex_chris. His GI wanted to wait 6 months because aside from the scarred up stricture, much to everyone's surprise there was nothing else going on. Everything looked clean. He also didn't want to introduce stronger meds without scopes and he didn't want to do scopes too soon after surgery. He wanted to be sure everything was healed up before poking around in there. I also think he just wanted to give DS a bit of an emotional and mental break. Since things looked good... just go be a normal kid for 6 months and then we'll see how you're doing.

I've read about the biologic/thiopurine combo working the best also, but it's usually avoided for teen boys in particular because, for reasons unknown, it increases their cancer risk. One study speculated that it had something to do with bursts of testosterone during puberty, but no one really knows.

If Remicade didn't work for him, we could then go to 6MP, right? Or is that a no go?

Still waiting for the GI nurse to call back. Mondays always seem to be the worst days to call.

 

[Jennifer]

Yes he should be able to go the thiopurine route if he doesn't do well with the biologics.

 

[Clash]

You could switch to 6MP if Remicade didn't work. Also, even before C added MTX to Remicade he had regular blood work, every month then every 6 weeks so he should still be getting regular blood work.

You may want to read through all the info regarding the risks with biologics and immunosuppressants. I know there is a raised risk for boys being on the combo but I think the risk is there if they are on the immunosuppressant then biologic or vice versa as well. Meaning those not immunosuppressant naive then being put on the biologic.

 

[jmckinley]

My son took 6mp for 2 years with great success. But once he had a flare, it was very hard to get under control and remicade failed. I have no idea if it would have worke differently had we done it in reverse. With this being critical growing time, I would probably try the remicade first if given the option. We weren't given that option because top down approach wasn't the preferred method then.

 

[my little penguin]

Immunosuppressant either alone or in combo is the risk factor ( Mtx , 6-mp or Aza)
The biologic by itself used by those without any history of immunosuppressants are at a lower risk factor.
Male children are not the only ones at risk anymore
The first studies just highlighted males at first .

We did 6-mp for DS first then remicade since 6-mp was not enough .

Good luck

 

[alex_chris]

Immunosuppressant either alone or in combo is the risk factor ( Mtx , 6-mp or Aza)
The biologic by itself used by those without any history of immunosuppressants are at a lower risk factor.

May I ask the source for this?

The 2010 study on aza and remicade says there is no difference in risk between remicade alone or adding aza to remicade.

Biologics are the more riskier drugs than immunosuppressives which is also why they were originally only prescribed to severe cases for which aza or 6mp did not work.

 

[my little penguin]

I will get it later
The problem is most have been on 6-mp or Aza prior to biologics even if they are not on them at the time of biologics hence the risk for those individuals is the same as those on the combo of biologics and Aza .

A person who has never been on any immunosuppressants however did show a lower risk
Look through the ped research section

It should be there I

 

[Clash]

I'll see if I can come across that study as well. When reading it I understood the risk to be the same between those who were once on an immunosuppressant then a biologic and those on both at the same time. Those immunosuppressant naive as C was when starting the biologic had less risk. Moot point now though since he is now on the combo.

 

[alex_chris]

I will get it later
The problem is most have been on 6-mp or Aza prior to biologics even if they are not on them at the time of biologics hence the risk for those individuals is the same as those on the combo of biologics and Aza .

A person who has never been on any immunosuppressants however did show a lower risk
Look through the ped research section

It should be there I

Hey, this is just different from the stats I have seen.

Aza/6mp:
"...And although serious infections might occur 5 percent of the time, life-threatening infections – something we call sepsis – occur very, very rarely. And if you see on that slide, the denominator goes from 100 to 10,000 because out of the 10,000 patients who take these medications, approximately 15 might actually have life- threatening infections... The risk of developing lymphoma or non-Hodgkin lymphoma, which really is the main cancer that we worry about with these medications, is only about 4 people out of 10,000 people who take it. "

Biologics:
"...Let’s talk about this risk of very serious infections or even dying from infections. So although that number seems high, 40 per 10,000 treated patients...That number for tuberculosis, 5 people out of 10,000, is low."

Combination:
"Going back to that issue of non-Hodgkin’s lymphoma, again, it’s about 6 people out of 10,000 if you’re using these medications in combination. Meaning an anti-TNF therapy along with an immunomodulator like azathioprine or 6-mercaptopurine."
http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

 

[Mehita]

Can someone walk me through what happens for an infusion, start to finish?

 

[crohnsinct]

Well at our center it is:

1 - height and weight check
2 - review of meds
3 - question and discussions about how she has been feeling
4 - she used to take tylenol and benedryl for possible allergic reaction but doc found that didn't make a difference so they stopped it but various centers still do it.
5 - nurses take a bit to prep everything
6 - insertion of IV and take all the blood they need for regular tests and whatever the doc decided he needed that month (this is great because one prick does it all...tests and infusion and no running to labs)
7 - slow drip over 2 hours. The first few are longer because they are slower so nurses can watch for allrgic reaction.
8 - nurses take temp and blood pressure every so often. Again the first few were evry 15 minutes. Not sure about now but it seems less.
9 - once Remicade is done dripping a short (15 minutes?) drip of saline.
10 - see ya later bye! Beginning to end takes us about 3 hours sometimes a little more.

The infusion center we go to is right at the hospital at our GI clinic. Docs are always floating around the hallways. The least little thing and the nurses will call them in for you. We have two small rooms connected with a doorway and 4 kids at a time. One nurse is always in each room but they do switch through out. Big comfy chairs. Hospital provided Ipad. TV with movies. Book swap. Moms and dads stay in the room. You can bring in any food you want (which I find odd because of allergies). Lots of chatting among nurses and parents and kids. Like a little tea party. Pediatric RA patients use the center also so not all always IBD kids which I think is neat because they learn about what other kids are going through and learn about other chronic illnesses.

When O got premedicated with Benedryl she zonked out in the car on the way home (hour and 15 ride). Now with no premedication she chats my ear off.

She feels fine afterward and has always gone to swim practice right after.

Hope this helps! Any questions, ask away.

 

[crohnsinct]

Oh my gosh Mehita! I just realized you are in Minnesota! Did you get that freakish snow? I heard in some places up to 18 inches! Ugh! That is the last thing you need!

 

[my little penguin]

Similar exp as above
Except
One large room with multiple stations / curtains
Automatic blood pressure pulse etc every fifteen minutes.

 

[Mehita]

Snow, what snow? I've had my blinds and curtains closed for the last two days. If I can't see it, it's not there, right? My poor tulips are very confused.

Thank you, thank you, thank you for for the details of infusion day. DS will really appreciate this. Sounds like we might be starting Remi as soon as next week. Now that we've had a taste of remission, it's just killing me to see it slip away...

 

[momoftwinboys]

H's experience similar to above. They do the tylenol and benedryl. He orders lunch off the menu and they deliver it during the infusion. The set up at our hospital is a little different. Everyone one gets a small little room with a tv with a dvd player and a wii. They have a library of movies and wii games. There is a recliner for H and a chair for parents. We usually rent a movie at redbox.

 

[DustyKat]

Sorry I am so late to this Mehita.

As Clash has stated, both of my kids are on Imuran and neither have had side effects or issues with it. They both achieved remission via surgery have been so for 7 and 2 years respectively.

I don't think there are any wrong or right answers as to which med to go, just different ones. I personally would go with what had the greater chance of achieving and maintaining remission, if that is Remi then so be it.

We have never been down the biologic path but I well know the fear and uncertainty. :ghug: I didn't have the time to consider anything with Sarah, it all happened too hard and fast but with Matt it was a completely different story...
First I hated the thought of him being on Pred, then that moved Imuran, then there was the suggestion of Humira and I was freaking even more, then all was taken out of our hands and surgery was the only option. At that point I would have gladly taken any med! Ugh, what a roller coaster ride and all I could think was what I had been fearing I was now wishing for! :eek2:

Good luck hun, no one should have to make these decisions for the ones they hold so dear. But since we do just know that whatever you decide it will be right hun. :hug:

Good luck!

Dusty. xxx