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Options? - Remicade, MTX or 6MP

Options? - Remicade, MTX or 6MP - Remicade update

Looking for advice...This has not been a great week.

My 11 yr old son, H, was dx last October. Up until recently, he was considered mild and was doing fairly well on aza.

This week we went to doctor and he has a perianal fistula. :eek2: When we were there in July he had a fissure, and initially thought it might be another one. He was also tender when the gi pressed on his lower abdomen. His CRP and SED are higher than they have ever been. He was prescribed flagyl and cipro.

Obviously, aza is not putting him into remission. He had a thioprine metabolite test in April where he was not at a theraputic level and the gi upped his dose. Want to do another test and see where the levels are now. I requested a test kit directly from the lab testing provider and am waiting for it. At this point insurance has declined it and I am looking to do the testing outside of insurance.

H has an identical twin, who is a little taller and 25lbs heavier, so we know there is a level of growth failure.

So options GI proposed
Remicade
MTX
switch to 6MP rather than aza

I asked again regarding LDN.

Son is so not happy with the idea of an IV or weekly shots. His experience with an IV was for his scope. Nurse had problem with one arm, switched to the other arm and said she pushed it to far and then went with his hand.

Asked IBD nurse I respect there, what would she do if it was her child. She said, remicade. Asked about the blood cancer risk and she said, initially they thought it was the remicade combo but now it has been found with aza alone, and humira. Said it is not seen with rhemi patients on the same meds, just with IBD patients.

So, I am asking you all what you think. How did you talk about it with your child?
I am open to any and all comments.
:sign0085:
 
Last edited:

my little penguin

Moderator
Staff member
We were in the same spot a few months ago.
We switched from 6 mp to Mtx first since Gi thought DS was mild.
SymptOms got worse so he just started Remicade a few weeks ago.
Your nurse is right cancer is higher in just 6 mp alone so we already took that risk without really knowing.
Hope he gets relief soon.
 
So BTDT.

If it were me and I knew then what I know now I would do remicade with methotrexate. The research wasn't there yet when we were faced with those questions six years ago and I was really scared of the unknown risks. I was also very ignorant about the cost of failing to control Crohn's especially in children.

Since you asked, that is what I would do. At the minimum I would do remicade. I would do both because if you're going to get the most out of these meds the research pretty clearly shows it's best if you do them together.

As for the cancer risk.

He is so much more likely to die in a car crash than to get cancer from these meds you can't really even compare the risks.

I know that doesn't help if it is your kid that gets cancer but reality is that uncontrolled Crohn's will destroy a child's life in ways that may make it feel like he has cancer.

Warning - sometimes it's better not to read too much about rare events/complications you know? If we all read every list of side effects on every OTC med we took we would never take anything ever again. Especially Tylenol.

So, you may want to stop now and take the advice of a highly educated, extremely experienced, works-in-the-field, practically-a-doctor NP and go for Remicade with or without a side of methotrexate.

If you want to read more in depth about the information available about HSTCL - the cancer that has caused so much worry - you may want to review this thread

http://www.crohnsforum.com/showthread.php?t=39337&highlight=hstcl
 
Location
Canada
So sorry to hear that H is not doing well. This disease is really the pits. I have no words of wisdom to offer just company in this rotten journey that we are all being forced to take. I hope he can get back on the path to remission again soon.

One of the GI docs had a discussion about the hepatosplenic t cell lymphoma risk while my son was in the room and he is now really afraid of Remicade. In retrospect I wish he had not heard that conversation. Maybe I'm wrong to wish that but I don't know if it benefits them to know these things at the age of 11. At the same time I guess that it is good for the kids to know that we are up front and honest with them about their disease and treatments and I suppose that this would include being up front and honest about the risks. I just think it stinks when this disease makes them have to face things that no kid should have to face. :voodoo::voodoo::voodoo::voodoo:

We thought we were facing a treatment change a while back and our doc was pretty strongly suggesting a change to Remicade + azathioprine. In the end they decided that he didn't need the change, but that is another story. When I thought they were going to make the change I did a lot of reading on it and all the most recent articles I have read have suggested that a combo of either Remi and azathioprine or methotrexate to be the leading choices at the moment.

Good luck with whatever you choose and I am sure that you will make the best possible choice for your son. Hope he is on the mend soon.
 
I'm sorry to hear that the aza isn't keeping H in remission. It stinks when you finally get up the nerve to put them on these meds and it doesn't work well enough!

We recently had to start Remicade with S....he's had is first loading dose. He's also getting weekly MTX injections. I'm not thrilled about it but I know we need to get him in remission before we cause other damage. He has a perianal abscess that was drained in December and then came back in February. It went away while he was on EN but continues to come back and drain a bit on it's own. It's our indicator that things are not well inside.

I want him to have a normal as possible life and he can't do that if he's in the hospital having surgeries and then recovering at home and missing school, social events, sports, etc. We tried MTX alone first and it just didn't do the trick. Our GI strongly recommended the Remi and kept him on the MTX in an effort to help prevent him from developing antibodies to the Remi.

I do not allow the doctor or infustion nurse to discuss possible side effects in front of S. He is 11 and a bit of a worrier. He doesn't need to know the risks or side effects of any medicine, in my opionion. I closely follow how he's feeling when he first starts taking a new med. He knows he needs to tell me if his body ever feels differently, (headache, nausea, etc.). It works for us!

Now to the good news....S has seen benefits from the 1 dose of Remi. We haven't seen a drop of blood (he's a bleeder) since the infusion, all bm's have been formed, and he only has 1 a day or every other day. Last night he said, "I haven't had stomach pains in days." Music to my ears! Seeing him be "normal" makes the decision easier, I guess. The "T-Cell" cloud still looms above me from time to time and probably always will. I pray a lot!

Good luck with your decision. I know it's not an easy one. (((Hugs))))
 
I was afraid of MTX and 6mp, but we did Remi. It's such a hard decision to make on behalf of your child...I wish you luck and (((HUGS)))!
 
So sorry to hear that the Aza isn't working! It is very stressful trying to deal with all the meds and their various side effects!
From all the reading I have done, if you are going to have to deal with one of the medications anyway - I would say go for the Remicade. They all have side effects but the Remicade seems to be the one that most people I have read about seem to have the most success. Plus it is just the infusion (the nurses tend to sound very nice and efficient) rather than weekly injections.#
Good luck with whatever gets decided!
 

DustyKat

Super Moderator
I have not been in the situation you are now facing but...

I have both of my children on Aza as a maintenance medication and it scares me senseless but I have also seen what untreated Crohn's can do and it scares me even more, my daughter came within a whiskers breadth of losing her life. I know this is not your situation hun but under treated Crohn's also comes with its own set of risks and cancer is one of those.

No parent should have to face the heartbreaking decisions we do. Is there anything harder in this world than having to make these sort of decisions for those we hold so very dear? I don't think so. I wish you all the luck in the world Mum and whichever way you go I hope more than anything it brings your boy lasting peace and relief. :hug:

Dusty. xxx
 

crohnsinct

Well-known member
So sorry his current meds aren't working. I would never presume to tell you what to do but I think you know our experience with Remicade. It has been great for O. Our doc doesn't seem to push the mtx addition to prevent antibodies so I can't comment on that but Remicade alone with the occasional EN to support it has been great for us. As for the risks, I agree with Patricia, there are so many more things they do every day that could take their lives and we accept those risks without even blinking...just the other day I received news that a member of our swim team was hit by a car while riding his bike and is in very critical condition. We accept these risks blindly and the rewards are no where near as great as seeing our child healthy, happy and thriving.

Good luck with your decision I know it will be one made with much love!

added: Remicade has little to no side effects...no nausea, headaches etc...easy dosing schedule once every 5-8 weeks...the infusion centers are great with the kids...just make sure to ask for a pediatric infusion center...it is like a mini vacation for O every time she goes. Her little sister is coming with us next time as school is out and she can't wait to see what all the hoopla is about.
 
So sorry to hear this, momoftwinboys. Same exact thing happened to Alex last year, but he was on 6MP vs Aza. The oral flagyl and cipro wasn't enough and we had to do 8 weeks of a PICC line IV of them to heal it. We went on Remicade then. Remicade is also particularly good at healing and preventing anal fistulas. I was freaked out about the 6mp/Remicade combo risk so we went off 6mp right away. I have not discussed any of the risks with him. Hard choice, but kids can't really handle the uncertainty, I think? He was amazing on Remicade! The infusion lab nurses are fabulous. We would numb his arm and hand before going in, which helped, but it was always the hardest part, starting the IV. After the loading doses, every 8 weeks was such a pleasant dosing schedule.
 
So sorry to hear that his meds are not working. I will keep you in my prayers. I am having to make the decision to change my son's medication from 6-MP, Entocort (been taking for over a year), pentasa, an sometimes prednisone to Remicade. My son is 7 years old and his been in the hospital 8 times for weeks at a time. His GI doctor said if we change his meds and Remicade fails - he will bottom out and be back in the hospital. So far he is doing great on his current meds but his GI doctor wants him off the steroid (Entocort) ...... Dont really know what to think, trying to do as much research as possible before I make this decision. For now I told his GI doctor that I didnt want anything changing til the summer because he is in school and doing well and having a great time with his friends, my son is gifted and loves learning. So school is a great distraction from all this. Any good or bad experiences with Remicade?? Thanks.
 

Tesscorm

Moderator
Staff member
Hi Tim'sMom

I'm so sorry to hear about your young son :( but, welcome to the forum. I'm sure you'll find lots of info, advice and support from the members and parents here! :ghug:

I don't have any info for you regarding the meds but I'm sure some other parents will be along.

I do want to mention Enteral Nutrition. You didn't mention it as a treatment that has been tried with your son. It is commonly used worldwide but not as much in the U.S. It has comparable success at inducing remission as steroids but has no side effects. It provides nutrition, allows bowel rest, is anti-inflammatory and has healing properties. You will find additional information on this in the two links below; the first is to a thread in the Parents section (Kids on EN) and the second is to a subforum in the Treatment section.

While it may not induce remission in everyone, it can be as successful as steroids and has all the nutritional benefits as well!

http://www.crohnsforum.com/showthread.php?t=36345

http://www.crohnsforum.com/forumdisplay.php?f=161

:ghug:
 
Thanks for all your replies. We have not made our decision yet....but need to soon. Feel like we are reliving the initial dx all over again, finding out his condition is more aggressive that we thought. I just want to pretend all is okay...but I know that will not get him into remission.

We did meet with the school to set up a 504 plan today and that went pretty well I think.

Thanks again to all for your support. Sooo looking forward to a cure for this lousy disease.
 

DustyKat

Super Moderator
Hi Tim'sMom,

Welcome to the forum. I am so very sorry to hear about your boy and of the decisions you may soon be faced with...:hug:

I agree with Tess regarding EEN. If this has not been tried I would certainly be keen to give a go. There are a number of people on the forum that use it as a way of assisting, with meds, to bring their disease back under control when flaring.

Good luck, I hope whatever path you choose your boy is able to find lasting relief.

Dusty. xxx
 
My son was 11 and diagnosed in October of 2011 as well. Our Dr. started him on 6mp and Pred to get him under control. He is on 6mp now and is in remission. He recently had a high fecal cal test result so next month he will take another and depending on the results we will be discussing a med change. After much thought on this I would go to the remicade. My goal is to get him to adulthood as healthy as possible, giving him the best chance he can at growing to his full potential. Not only that but I think it is important to their brain function, concentration levels, school work, self esteem, etc. Once he is an adult I feel we can switch to a less severe med if he is doing well. It also buys us some time as new meds are coming out and I think there is a really good chance they will be much improved. I want to keep his G.I. tract in as good condition as possible until that point. I think often the toll of mild inflammation that persists for years is downplayed too much. The quicker you can get this under control the easier it is to get and keep under control. I truly believe that it is not so much that certain meds don't work for some people but more that conditions get bad enough that certain meds can't have the desired effect. (This is only my opinion.) The risk of letting that inflammation get worse to me is much higher than the cancer risk. I once thought that I needed to hold off on Remicade as long as possible to "save" this medication for later. But I now feel liked it can be used through adolescence and if it stopped working we could always go back to 6mp. This is such a personal decision and everyone has to do what they feel is right for their own situation. I am sure you know your situation best and will make the best decision for your son based on his information. Just wanted to share my thoughts. I know this isn't easy. ((((((hugs))))))

Tiffany
 
My son is on Remicade it was his first med after diagnosis(not counting pred which was used while we were switching from diagnosing GI to Ped GI and setting up Remicade with ins.) The pred did not make a noticeable difference in my son's symptoms and a ct scan showed it wasn't helping with the inflammation in his TI either. The effects of Remicade were immediate, within a few days of infusion his symptoms were negligent and all the loading doses went really well. He has started experiencing symptoms now that we have stretched out the dosages to 8 weeks and we are currently on pred again(ughh) while awaiting our Remicade infusion which they moved up to week five and are going to up the dose.
I know how much better the Remicade can make your child feel. C has no side effects from the Remicade other than general tiredness the day of infusion but he also has benedryl so it could be the cause of that. I hope that this is just an issue of finding the right level of Remicade and tightening the schedule to the needed point. As scared as I may have been at the thought of using the strongest med first, the results were so fantastic that I'm more afraid of the possibility that it won't work for him now. If confronted with that after moving up schedule and upping dose I feel right now that I would choose the MTX combo with Remicade.

I feel and felt the same way as Johnnysmom, afraid to go straight to it in hopes of "saving" it for later then using it now to achieve remission in hopes of no long term damage for growth reasons and it also buys time for hopefully new meds to come along.

It is a hard decision and one that seems to have to be made during a time when you are overwhelmed by all that is taking place only adding to the anxiety of it all. I truly hope both or your LO's are back on track soon and feeling alot better!
 

crohnsinct

Well-known member
Hi Timsmom: Just wanted to let you know my daughter is also on Remicade and doing very well. I agree with the others. I was scared of it at first but seeing what it has done for my girl I am loving it. There was a time it dipped in effectiveness so we did a 6 week course of EEN and that got her back on track.

Perhaps you can try doing a course of EEN to support his current meds before abandoning them and going to Remicade?
 

my little penguin

Moderator
Staff member
Remicade here.
He has had two infusions so far. Now DS does have a lot eim still and some blood but his activity level and happiness level is so much better I would like to kick myself for waiting.
He was miserable on 6-mp and not much better on Mtx .
Not an easy choice but the ultimate goal is to stay as healthy as you can for as long as possible .
I know a few adults ( older) with the disease . The basically said jump at the chance for the good drugs since leaving the disease under lLess than optimal cOntrol can be regretted as an adult.
 
Tim's mom, Sorry to hear about your son...he has been through so much already. This disease and the decisions just bite. No advice since we are trying to figure out the same thing.
 
Sitting in the infusion room with H. He is playing wii and is ok. This is his first remicade infusion. Looking forward to improvement. Thx again for letting me know of your experiences. It made the decision easier.
 
All went well.

Mlp did u find out about his eyelid rash. H has had a bump on his eyelid and below it. Gi did not seem to be concerned. He has had it for over a month. Good luck Thursday
 
Tomorrow is H's second remicade infusion. He said the day after the first infusion that he had not felt that good in a long long time. He is eating again, normal bm's and thinks his fistula is gone. Fingers crossed this continues.
 

my little penguin

Moderator
Staff member
:mario2::mario2::mario2:

for feeling good.

Good luck with infusion #2.

DS's rash is now on most of his face.
WE started steroid creme on it on friday night.
He sees allergy on tuesday so I will ask then.
He also had skin peeling between one of his fingers.
 

DustyKat

Super Moderator
Wow fab update Mum! :):):)

Sending loads and loads and loads of luck and well wishes that it keeps on keeping on!

Dusty. xxx
 
H had his third infusion Monday. He is feeling really good. He has gained weight and had small amount of growth. (Knock on wood)
He is constantly messing with his brother so we know he is feeling feisty. Crohnsinct you can gauge O's progress thru swimming...it appears our gauge will be the amount of brotherly bickering and wrestling.
His CRP is less than .5 and his SED is 15, lowest it has been since dx.
He also had appt with GI this week. He is no longer taking aza as his GI usually stops it after 2nd infusion (we did not get the memo so in H's case we stopped after 3rd infusion). Fingers crossed the Remi continues to work for him.

Thanks again for the input when we were making the decision.
 

crohnsinct

Well-known member
Brotherly fighting...LMAO! :rof::rof: Hey whatever works!

So glad things are on the upswing for you. It is so great when you find something that works. Makes all the scary warnings so much easier to take doesn't it.

Hope things just get better and better for him!
 
Knock on wood.... H had his fourth remicade infusion Monday. His lab results were the best they have ever been, he is feeling good, and he gained 3 lbs since the last infusion eight weeks ago. :dance::dance::dance: For the first time since dx his SED rate was NORMAL. I love normal.

The boys had a basketball game yesterday (won 29-9) and hubby said you could tell H's energy level was great.:basketball::basketball::basketball::basketball::cheers::cheers::cheers::cheers: He thinks he can get thru the season, but his basketball shoes are getting tight:ybiggrin::ybiggrin: in addition to another pair of sneakers that he outgrew that we got this summer.

Been really busy with work and the boys and hop on the forum on my phone when I get a chance. My thoughts and prayers are with those that are struggling on the moment.
 
H had his 5th remicade infusion and GI checkup recently.

He had strep throat 3 or 4 weeks ago (and generously shared it with his twin and his dad). He recovered pretty quickly with the antibiotics with no problems.

OK, I am a little afraid to say it..... do not want to jinx it :eek2:...knock wood... I am whispering this...H's GI said a couple of weeks ago that H is in remission. Labs look great, (his labs usually reflect his condition), feels good, good appetite, growing and gaining weight. Whatever they call it, I hope it continues forever! :emot-dance::emot-dance: We are grateful and enjoying it :ybiggrin: for as long as it lasts

My heart breaks for so many going through so much, thought I would share some good news.:ghug:
 
:banana::banana::banana: Woohoo!!!!:banana::banana::banana:

That sounds like awesome news!!! If he feels great, is eating good and growing, they can call it whatever they like...I'd still love it!!!
 
Woo hoooooo!! Love to hear good news - long may it continue! So nice when a hard decision turns out to be the right decision :yoshijumpjoy:
 
update on my son.

H has been on remicade about 7 months...and knock wood again...he is doing well on it. His labs last week were all normal again. He is looking and feeling good. :thumright:

He has gained about 20 lbs in the last 7 months, eight of them in the last 8 weeks. We talked about how well Jmrodgers4's Jack was doing on the shakes and he started doing 3 boost shakes with mint chip ice cream a day for about a month. He has dropped to one or two a day since he has filled out. Hopefully height is next now that he has some weight on him! When H started remicade, his twin was 25 lbs heavier and now the difference has shrunk to ten pounds. They are looking more alike and some of their friends have gotten them confused. Even I have had to look twice when I see only their heads. :ybiggrin::ybiggrin:

We have filled out the paperwork for Camp Oasis and he is very excited to go...just waiting to hear about his acceptance.

I am grateful my boy is doing well right now. Hoping for a cure for all our kiddos!:ghug:
 
H had his 3 mo check up Thursday.

Good news---he grew an inch since his 2/28 visit (and added 14lbs some of it reported above) He is 4'9' and 98lbs now.

Before crohns H (and his twin) tracked 50% height and 75% weight (muscular). Since Crohns, he has been tracking 25% height 50% weight. Drumroll....this visit he jumped to 32% height 69% weight. A beautiful sight on the growth curve chart! GI was pleased and attributed it to Remicade. I agree that it is likely the growth would not occurred if the Remicade had not put him in remission. However, my family is all in agreement, the period of 3 boosts a day for 4 weeks in March/April jump started the increase. We watched the transformation during that period. He is gaining on his twin and we are having a harder time telling them apart when we look quick.:emot-waycool::headbang:

I mentioned on his swimming pool? rash thread, we need to watch his rash. It is getting better. GI would be concerned if it was poison ivy/poison oak as Remicade makes it spread like crazy.
http://www.crohnsforum.com/showthread.php?t=52273#post665380

Asked about Ophthamologist appt and GI said yes he should go annually..Thanks to the parents on crohnsforum i knew to ask...:applause:

Other than that...all appears to be going okay. (Knock wood)
 

my little penguin

Moderator
Staff member
:soledance::soledance::soledance::soledance::soledance:

Love the weight and growth. DS did the same on remicade

long may it continue
 
. However, my family is all in agreement, the period of 3 boosts a day for 4 weeks in March/April jump started the increase.
Could not agree more, that was our experience as well although I do think the meds allowed us to get full effect from the supplements.

So glad he is growing and gaining. Wooohooo Go H! Keep it up.

(We need a cheerleader emoticon)
 

crohnsinct

Well-known member
What awesome news! Makes the scary monster drugs look like that basket of kittens eh? Did you post on the success thread? Certainly worthy of being there as well. Gives hope to those still waiting. THanks for sharing.

My favorite Dusty smiley is still Dusty kat's poop :poop: But of course why would nasty city girl like a pink pom pom toting cheerleader over a pile of dancing S$*t!
 
Quick update---
H had his infusion couple of weeks ago. Knock wood. Labs still normal (and we love normal). He gained another 4 lbs and grew another 1/2 inch. Overall all is going well. :dusty::dusty::dusty:

Started cross country for the first time at school. So far so good.

He had a great time at camp oasis and wants to go back next year.

CIC, I am a little afraid to jinx anything by posting on success thread. Maybe wil be more brave in time.

Wishing all remission and a cure soon.
 

DustyKat

Super Moderator
Oh wow! Thanks for the fab update mum! :dusty::dusty::dusty:

I am so happy for you and your lad. May it keep on keeping on forever! :)

Onwards and Upwards!
Dusty. xxx
 
So, it has been a year since I last updated this thread. Knock wood, H remains in remission and continues to have success with Remicade. (always a little worried about posting good news, afraid to jinx it)

He has been relatively healthy this last year. He had a virus that turned into an upper respiratory infection last winter that caused his infusion to be pushed back a week. Other than that, so far so good.

His numbers are good, he has gained 35 lbs and 4 1/2 inches in the 22 months since starting Remicade. He is within 1/2 in and 5 lbs or so of his twin so that is good progress.

In the last year, he became a member of the National Junior Honor Society, ran school cross country, swam for school swim team, summer swim team and made swim conference, hunted, fished, earned his black belt in Tae Kwon Do, and added lacrosse to his list of things he likes to do. In other words, he and his brother are keeping us busy. We are so happy and proud of him.

We have been enjoying his remission and living life (and trying not to worry about things) Wishing remission until the cure is discovered for all dealing with this disease.
 
So glad to hear the great update.:hug:
grace will be starting Remicade soon and I hope to be able to give the same great update.
Also I know how he must love being close in weight and height to is brother.......I'm a twin myself and would have hated my twin to be taller. lol
 
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