Remicade & Imuran for boys

[mreyn]

My son was started on Remicade and they are adding Imuran.... he is 12. After reading the information about what it has caused in young boys. I am beside myself with fear and sadness. I want to feel like we're doing what's best... as this was the only option we were given. But I can't help but feeling like I'm handing him over to possibly become worse with another untreatable illness or worse. Please, please, if any of you used both as young boys, or have kids who use it, please share the good things it has done. I have to find peace with this so maybe if I hear from some who have used both together, that will definitely help.

Thank you all

 

[Sascot]

Sorry my son hasn't used either one, I can understand why you are so upset! My son is 13 and these things worry me too. Just wanted to send warm thoughts, I hope that this combination will make your son feel so much better. If it makes his quality of life great again then it will be worth it!

 

[my little penguin]

My DS age 8 has been on 6-mp and remicade . Currently remicade only.
Ccfa has good stats which can help you feel better.
T cell lymphoma is rare so rare it didn't even show up in the studies.
Any person on the street has a risk of getting it about 2 in 10000.
By taking both drugs or having a history of both drugs even separately the odds only go up to 4 in 10000. So doubled yes but still rare.

Odds of your child under 14 of dying in a car crash 1 in 250( at least in us)

Remicade has been a miracle drug for DS.
I almost forget he has crohn's not quite but he is doing so much better.
It did take every bit if the three infusions to get to that point though.
Hugs

 

[Patricia56]

I agree with my little penguin. The chances of his developing cancer are very, very, very (add another 10+ very's) tiny. If you haven't spoken with his doctor about your worries, you might want to do that.

There is a potentially huge advantage to adding imuran or methotrexate to his treatment regimen. In adults, the large research studies have clearly shown that using a combination of medications prolongs the time that the biologic is effective.

Since your son is only 12 and we only have 3 biologics at this time, you want to do whatever you can to extend the amount of time that Remicade works for him. Adding either imuran or methotrexate is the only way currently known that will do this.

And my son who is 16 1/2 now was on both 6-MP and Humira then Methotrexate and Humira for almost 3 years from age 11 to 14. He is now just on Methotrexate. He got into a solid remission with the combination and after about 3 years decided to stop Humira and stay on Methtotrexate alone. That has held him for more than 2 years.

He had some mild flaring in June and we increased his methotrexate. He goes for a followup MRE on Monday. Since he has had no more symptoms we are hoping he is doing OK and can go back down on the methotrexate.

It is very scary to see a list of all the potential things that can happen, especially when you are already feeling scared and upset. I know I sure felt that way when my son was first diagnosed. Sometimes it is best not to read too much especially things like the PI sheets unless you understand the way this information is collected and reported. Some things on the lists of possible side effects are not really side effects of that medication - they just happened during the drug trial for other reasons but because they happened the drug company has to list them.

And it's helpful to keep perspective. if you read all the possible side effects of tylenol you might not ever use it again, especially for your children. But we all know that those rare side effects are truly rare because no one we know has ever had them happen (at least no one I know of).

Finally, if you don't have much choice - as in this case - it is likely to make you anxious and upset about something you can't change. For me that is a recipe for depression and anger at deities and the universe in general which isn't helpful to my child or myself. Plus it doesn't leave much room for gratitude that there are medications that are helping my child.

I have come to appreciate the value of denial in my later years. In this case I suggest you consider embracing the approach of the ostrich and find a hole in the sand for a nice vacation from this issue.

Many hugs.

 

[DustyKat]

I wholeheartedly agree with mlp and Patricia mreyn...:hug:

I have never been faced with the decision you are now forced to consider. I have thought about it though as I never know what the waits around the corner.

It matters not what angle you come to this from the decision is heartbreaking to say the least. Both of my children take Imuran as a maintenance medication and I moved from one fear to the next with my son...Prednisone, Imuran, Humira and finally surgery. We never did get to the Humira but when surgery was the only option the fear I once had for it suddenly dissipated. I would flush Matt's drain twice a day and each time I looked at his perfect tummy I hated the thought of them cutting into him and what his likely legacy following surgery was going to be. I hated and feared that he was going to endure what my daughter had.

But you do what you have to do. The most important thing is to get them into remission ASAP and keep them there as long as possible. Medication has its risks, surgery has its risks and under treated Crohn's has its risks. In my mind and view the serious side effects of medication are far, far, far less than those of surgery and Crohn's that is left to simmer and go its own way. I know this is of small comfort when it is your boy that is faced with it but just know we are here for you and with you every step of the way.

Dusty. xxx

 

[xmdmom]

Mreyn, I know I'm coming late to this discussion. I think you do have a choice. I understand your concerns. I want my 19 year old son to avoid imuran or imuran/biologics if at all possible. I believe there are doctors out there who do not use combination therapy (biologics + imuran/methotrexate) in boys, or at least it's not the first thing they do. See below, the upcoming IBD conference will be discussing this. Also see http://www.gastroendonews.com/ViewA...&d_id=233&i=November+2011&i_id=789&a_id=19709
for some views on combination therapy from 11/11

I'm wondering how long you're son has been on Remicade and how he's responded, and why the doctor wants to add Imuran. What does the doctor say are the risks and benefits of adding it. If you don't agree to Imuran, what would be the other options, per your doctor? I don't know if you have had this discussion with your doctor, but if you haven't, you may be surprised that your doctor is more flexible than you think. Or not...

Best wishes! It's definitely not an easy decision.


SESSION VIC: CURRENT CONTROVERSIES IN PEDIATRIC IBD
Moderators: Lee A. Denson, MD and Bradley C. Linden, MD

4:00 pm
1. All pediatric patients with recent onset, moderate to severe, inflammatory Crohn’s disease, should be treated with immunomodulator monotherapy
James Markowitz, MD, FACG

2. All pediatric patients with recent onset, moderate to severe, inflammatory Crohn’s disease, should be treated with anti-TNF monotherapy
Anne Griffiths, MD, FRCPC

3. All pediatric patients with recent onset, moderate to severe, inflammatory Crohn’s disease, should be treated with combination therapy
Athos Bousvaros, MD, MPH, FACG, AGAF

 

[mreyn]

They just started my son on Remicade. He has had 2 infusions and will have the 3rd nov 28. The dr wanted to add imuran immediately and his reasoning was the imuran will keep his body from building antibodies to the remicade. However, I have read about some who have used remicade alone for years with not problem, and I've also read about some who've used combo therapy and it still failed.

When this came about, they had him do a prep to get ready for more scopes and biopsies because his previous one had them confused to if it were crohns.. biopsies and bloodwork didnt show crohns. The prep wiped him out and landed him in the hospital for 4 days... they had him on steroids, 2 antibiotics, hydration and then the paperwork was presented to us to start remicade/imuran.. by the nurse in the hospital.. never saw the dr. After reading side effects and it was immune suppressing I broke down and they got the dr on the phone. He is not a pediatric gi and he is very dry... we were not given any other options.. I've been reading to find other options. And if you question the dr or try to get him to actually have a conversation with you about it all.. he gets very defensive and like he's shocked we would question him. I did specifically show him the side effects black box warning for imuran/remicade in young males and he glanced at it and said, yeah, that's very rare.

we don't have other options where we are and he's the only one close (1 hour away) that would see him because of his age.

 

[xmdmom]

It's a bad situation when the doctor gets defensive when you question him. It may be worth traveling to get a second opinion with a pediatric gastroenterologist and/or find a GI doctor you can actually ask questions.

I hate when doctors act like there is only one way of doing things and it's their way.

Did the doctor say your son has moderate or severe Crohn's?

 

[mreyn]

Never said... originally when the first scopes/biopsies were done...he just had inflammation and ulcers in his ileum . Now, the scan showed thickening involving more of his intestines and they even had a surgeon look at him to see if his appendix was having trouble, but turns out it's crohns related.

 

[crohnsinct]

Oh mreyn...sounds like you need a new doc. One who will sit and explain your son's disease, extent of disease, treatment options etc and I second that a pdiatric GI would be best. I am sorry there isn't one closer. We also travel an hour and a half to our doc but he is amazing. When dealing with a new diagnosis and a confusing one such as this you really need a doc you can partner with to care for your child.

Hugs to you during this confusing time.

 

[my little penguin]

Mreyn-
Have you looked at the pediatric improve care now?
They list the top pediatric Ibd centers mostly in the us.
There are some in Texas.
I know it would be a drive.
We drove over 5 hours for our second / third opinion .
For two years one of our specialist was over two hours away.
The reality is after you get to remission your visits are every 3-6 months so very doable .
Lab testing can be done locally as can mre etc...
Most questions are answered by the doc through the phone
So.....
Check out this list:

https://improvecarenow.org/about/who-we-are


Texas

Cook Children's Fort Worth, TX
Dell Children's Medical Center of Central Texas Austin, TX
Texas Children's Hospital Houston, TX
UT Southwestern Medical Center | Children's Medical Center Dallas Dallas, TX

Good luck
You really need a doc you trust and one you can discuss things with.

 

[xmdmom]

I'm curious. Was your son treated with other meds before Remicade? Is the Remicade helping now?

To confirm that some doctors avoid combination therapy--->I am watching a March 2012 webcast by Dr. Hanauer U Chicago who says 1) combination therapy is more effective than biologics alone 2) but we may give monotherapy or limit exposure of combination therapy in teenage and adult young males (though the slide actually says "Which patients should not receive combination biologic and immunosuppressant therapy?" and lists teenage and adult young males,and those over 65 years old.

My Little Penguin, that website is a good resource. You're right it's worth travelling.

 

[SMSIRL]

Hi Mreyn,

I used to contribute a lot to this site years ago, and have only just returned.
The issues you face are difficult, and the decisions you have to make demand nerves of steel at times.

It is unfortunate that because of failures in my profession (medical research) the information on which to base our decisions is frequently limited or poor in nature. I remember when I was first diagnosed [which was 20 years after my symptoms started] I was told that there was no risk of lymphomas & leukaemia’s associated with Imuran. This was important to me as there is a strong family history of same. It is only recently that the FDA has put a black box warning on the documentation to indicate that there is this risk. This information was around for years in the science community, but seems only to become of interest to the pharmaceutical industry and FDA when the newer biologics came forward to replace or augment Imuran.
Unfortunately, I did not follow the scientific data I had and started to take the drug before the FDA had a change of labelling. The nature of Imuran -a purine analogue - means that there will be an increased risk of blood cancers which will continue for many years after I stop.

I believe, the lessons to be drawn from this are :
it is important to go beyond that research done by,on behalf of, or funded by the pharmaceutical companies, as it is well documented that they are not always upfront vis-à-vis negative results
make sure to get more than one medical opinion
make sure that your medics show healthy scientific scepticism, as clinicians tend to be pressed for time and tend frequently to rely on research provided by the industry, and on research that, while looking independent, is in fact funded by pharm companies.
Read-up and talk through the research in detail with your medics, and if they seem not to show adequate critical understanding of the research, find a new medic.
If you do go with a riskier medication, which may well be warranted, have regular reviews with a heightened vigilance for cancers and infections.
If you take these things on board, then you have done all the vigilance that you can given the brief period of time these meds are on the market.
Once you have carried out this vigilance, the decision comes down to one of recognising that if the symptoms are sufficiently problematic then a choice must be made. It will be the best decision you can make under the circumstances and you will have nothing to reproach yourself over.
The next element is to recognise that few decisions are permanent. You can and should review the research and alternatives regularly. In this way you can insure that the best decision is being made at all stages. DO this even when the treatment is working, as less risky approaches may present themselves over time. It is a common mistake in medicine to start using a drug, and never to review it once it works. Frequently, due to changes in the body over time, doses need to be changed or drugs discontinued or replaced.
Having emphasised the importance of scientific scepticism, it is even more important to realise that scientific scepticism is used to insure good science is at the bases of our knowledge – it does not mean being sceptical about science itself. Many “natural remedies” have considerably less scientific research to justify them than any drug used for IBD.
A book that may help you understand the difficulties in pharma research, and will provide you with the ability to insure that you & medics can recognise the many misguided approaches to medical research, and what to look for to filter out good results from bad results is :
"Bad Pharma" by Dr. Ben Goldcare MD


All the best

Seán

 

[mreyn]

Hi Sean, It's all been very hard. I don't even like the idea of him using Remicade alone due to the horrible side effects. I would love to find him a natural or safer protocol that wouldn't involve such scary drugs and would help heal him or at least keep him in remission. I wanted to start or try him on boswellia, curcumin and ldn like crohnsdad used but now with the remicade the questions become.. can I use alternatives like those and more with remicade, and how do i know which is helping him more.. remicade or the alternatives?

I have heard that if we stopped remicade, he could get worse and then we may not be able to use it again due to his body building antibodies against it.

He was doing really good when we came home from the hospital and we werent sure if it was remicade, steroids, antibiotics or what they did that.. he had a great appetite, he gained weight ( in about 3 weeks), and said he felt happy and normal. the dark eyes had gotten better, his color got better, no vomiting, no tummy pains,no headaches. but in the last couple days, since he got off prednisone which he was on for 3 weeks and they iv'd it in the hospital.... his appetite is once again lacking, dark eyes are coming back , he's tired again, and headaches for the last 2 days in a row.

I don't feel like remicade is the best option for him, but we needed him to get better fast and to catch up on all his growing. Every time he goes to the bathroom, my whole body tenses up because I don't know if the vomiting is coming back. I 'm trying to read and talk to everyone who has this and has gotten better with out drugs and are drug free .. other than supplements. I desperately want to get him better with other things that heavy duty drugs he will have to depend on his entire life, or for that to stop working and have to face the now what question.

 

[muppet]

The cancer risk is infinitesimal. What have they done for him beyond drug regimens? Diet, etc?

 

[Clash]

myren, it would seem if the symptoms came back when the prednisone was tapered that he may have been feeling better due to the steroids.

With all the concerns you have and the relationship between the GI, you may want to do as others mentioned and get him to a Ped GI. Children aren't just little adults and shouldn't be treated as such. Also I know that some GI's probably do go off the bat with the combo but that really wasn't the case for us. And there are many kids that C sees at infusion that are on nothing more than Remicade, for years in fact.

I know the most important thing is to get his inflammation under control so as to not cause his intestines damage that may require surgery but you also have to feel comfortable with the choices you are making and if you aren't then get the second opinion and let the docs know how uncomfortable you are with the medications. The "step up therapy" was in practice long before the "top down approach", maybe there are other meds or approaches you would be more willing to try and a Ped GI may be more open to the fears, concerns and options you want to try.

I'm so sorry you are having to go through all of this and I do hope that you are able to find something to get your son into remission.

 

[jmckinley]

I know everyone has given you some great advice. My teen son has never had imuran, but did do remicade and methotrexate in combination. The decision to do it was very hard and wasn't a sealed decision until he was hospitalized. The attending GI finally gave me some peace about the medication. She made me realize that the risk of leaving his Crohn's untreated or "under treated" was a greater health concern than the possibility of cancer down the road. Constant inflammation and scarring can cause even more damage.

It is tough to make these decisions, but I hope you can feel at peace knowing you are getting him the best treatment possible.

 

[JacksDad]

mreyn - My wife and I are going through this right now. Our son was diagnosed with Crohn's when he was 10 years old. A happy, normal weight and sized kid. He is now 15 years old and 5'10" and anywhere from 100 - 113 lbs. He was on all of the usual medicines, prednisone, azathioprine, asacol. Since January 2012 he has been on Remicade. At some point maybe around May they upped his dosage. He also takes Pentasa. He hasn't been "right" almost the whole year. He missed 60 days of school last year and so far 25 days this year!

He was recently in the hospital for 5 days to hydrate and receive 40 mg of prednisone. We are just now starting an 80% liquid diet to rest his inners and they want to add Imurane back into his list of drugs while he is still doing the remicade. We're mulling over all of the data like you are. Lucky for use we really do like and trust our pedicatric GI team. We are near Philly, so we have some wonderful children's hospitals within 30 minutes of our home. We may take him to get a second opinion at another very good children's hospital across town. An MRE shows he's not ready for surgery so they want to go this route. Yes the odds are 2-12,000 to develop cancer just on his own, they go up to 4-12,000 on remicade and go up to 6-12,000 on both .... but even 1-100,000 worries a parent!

I really need to hear the risks of continuing his treatments vs. the double meds. Maybe this 80% liquid diet could provide relief? Our doctors tell us the Europeans treat crohns with a 100% liquid diet and not meds quite often.

Has anyone been on the 80% liquid diet? Can a smoothie or pureed soup be considered a liquid? Seems cruel to blast him with prednisone and then tell him he can only eat one meal a day!

 

[muppet]

JacksDad, have you ever gotten a second opinion regarding your son's treatment regimen? It sounds like he's having a pretty rough time even on all those hard hitting meds. Has he done any sort of dietary modification along with those meds? I can take all the meds I want, but if I'm still eating pepperoni pizzas and ice cream, I'm still going to be sick as heck.

I've never heard of an 80% liquid diet for bowel rest, it's normally liquid, or not, in my experience. I'm a big believer in bowel rest but many doctors don't believe it helps anymore, might be worth asking if there's data, your GI should know. If he doesn't know, you might consider looking for another GI. Not that I have anything against bowel rest, as I said I believe in it, but your specialist should be able to justify it. He or she should be able to explain the reasoning behind any of these many drug changes to you. It sounds a little like he's throwing darts at the wall hoping for a hit, to me.

Combining Imuran with Remicade is fairly common. I think it does present increased risks but I'm not well versed enough to talk about them (but no doubt many here are, you could try the Remicade subforum).

Of course, untreated Crohn's is also a cancer risk, so you have to take that into account. It's almost never a clear cut judgment call, unfortunately.

If you're feeling antsy about his treatment, though, my best advice is to talk to another GI and get another perspective, preferably one at a large, metropolitan hospital with ties to a university that does research and teaching there. We commute a few hours to Boston for care for this reason. It's been night and day with us over our 14 year old daughter's old GI (she was diagnosed at age 3, 11 years ago).

 

[crohnsinct]

Jacksdad: My daughter was started on Remicade as her initial treatment along with prednisone. Every time we decreased the prednisone symptoms would reappear so the doc declared that while Remicade was making her somewhat better it needed a boost. The suggestion was to add a drug but we opted for a course of Enteral Nutrition (receiving all their nutritional needs from a formula they either drink or use an NG tube for - my daughter drank Boost and Ensure but there are many different formulas to choose from). At the time our doc felt very strongly that it had to be 100% and for a minimum of 6 weeks. But by the end he was telling us there is new evidence that a lower percentage would work as well but he wasn't comfortable with anything lower than 80%. We ended up doing 8 and then a transition phase. It worked great for us and as of now she still looks good and is returning good labs.

In many cases Exclusive Enteral Nutrition is just as successful at inducing remission as steroids and has been proven better at achieving mucousl healing. The one caveat is that the remission is not maintained once you come off. It lasts differently for different patients. Some 3 weeks, some 3 months, some a year or longer. So our plan right now instead of adding drugs is to cycle on and off EEN as needed.

I would say it is worth a try and I would probably go 100% if your son could do it, to give it the best chance at working. I would probably even try to add a few shakes to his diet anyway for nutritional benefit and help with growth (weight gain).

Good luck with your decision.

 

[Tesscorm]

Ditto everything Crohnsinct said about EN. My son did exclusive EN for six weeks (through NG tube) to induce remission. He wasn't allowed any food but was allowed clear fluids such as broth, clear pop/juice (no fibre), etc. EN can be used exclusively to induce remission (comparable results as steroids) or together with food as simply a nutritional supplement (my son now ingests 1/2 dose of the same formula but eats a regular diet).

However, as was also said above, EN is not as successful at maintaining remission as are medications.

here is a link to the Kids on EN thread - you'll find lots of info here.

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

Good luck!

 

[JacksDad]

We haven't gotten a second opinion yet, but we are probably going to get one at Children's Hospital of Pennsylvania. Our current hospital is very good and is affiliated with many of the city's universities.

Today is the second day of the one meal diet. He went to school with an Ensure in a thermal container. I'm sure he'll be looking forward to dinner!

Thanks for all the great feedback.

 

[izzi'smom]

JacksDad...CHOP is where our doc tried to send us for a second opinion (he did his residency there)...I hear it is top notch! We ended up choosing Boston for a second opinion instead.
Remi wasn't working for us and we also opted to add enteral nutrition. We did it via ng as dd was 4 and she wasn't terribly restricted as far as diet because she was losing weight. With 5 cans of peptamen a day she wasn't terribly hungry.
Wishing you loads of luck, and keep us posted!!

 

[JacksDad]

I'm noticing many people on Pentasa are on lower doses. My son is taking 3x500mg three times a day. I've yet to see that dosage. I think he's been on that dosage since January when he started his Remicade treatments every 6 weeks ... or are we down to every 4 weeks now?

 

[muppet]

Its not a huge dose of ASA but I wonder why not lialda at that dose instead of pentasa.

 

[JacksDad]

Ah, you made me update his drugs list ... he was on lialda before going on pentasa. Not sure why the change. He was hospitalized in January and this past week for about 5 days each time to hydrate and get MREs and scopes.

 

[my little penguin]

I have heard of anything but 100% elemental to induce remission.
You can use it as a supplement which is what we do with DS but 80%.... Strange.

 

[DustyKat]

As far as I am aware the EN regime that is prescribed in Australia is at least 6 weeks, but tending to 8 weeks, of exclusive.

Does anyone have any studies that show success with the reduced rate?

Dusty. xxx