Risks of remicade in teens and young adults

[Monnipenni]

My son just turned 18. Last year he was diagnosed with ulcerative collitis and has been on pentasa ever since which hasn't worked perfect but controlled it so that he could function normally most days. In the last couple of weeks, he's gotten really sick and has anal abscesses. He spiked a fever for a weeks and stopped eating. He ended up in the hospital 3 days ago. He had a colonoscopy which revealed severe ulcers. He also has a bad infection from the abscess. The surgeon came a couple of days ago and performed a surgery on the abscess which they said was the only way to rid the infection and they can't start him on any medication for crohns/collitis until the infection is gone. He's also on super strong antibiotics. Based on the symptom of abscesses, they believe he could have crohns and not collitis as originally thought! Once his infection clears up, the dr wants to start him on remicade but the side effects are terrifying. The risk of lymphoma is higher in teens and young adult males and I don't want to take that chance. I think there should be something else he could try first? Has anyone had a similar experience? I don't want to take any risks with him

 

[Patricia56]

Actually the most recent research is suggesting that the drug with the greater risk for lymphoma (a very, very, very, very tiny risk) is Azathioprine (AZA) also available as 6-MP and Imuran.

New research is also pointing to skin cancer as a potential hot spot for people on immune suppressant meds.

The most recent research to come out of the TREAT registry, a huge registry of people who are using Remicade, found no clear association between use of Remicade and malignancies of any kind. Here's a link to the article:

http://www.nature.com/ajg/journal/v109/n2/full/ajg2013441a.html

I hope this calms your fears because Remicade is almost certainly the right medication for this situation - as your doctor has recommended. It is highly effective in treating perianal disease and fistulas.

Hope all goes well and he gets feeling good again soon. My 18 yo son was in the hospital 3 times in Jan and Feb and started Remicade while inpatient. It has been very effective and he might not be alive without it. I had no hesitation at all having him start it. He also takes Methotrexate to help reduce the chances of developing antibodies to it.

 

[Mehita]

I'm sorry to hear your son has been struggling. I find it concerning that he only "functioned normally most days". I'm guessing the he's had active underlying disease the whole time which peaked with the abscesses?

My son had an abscess and fistula last fall. As you know, things can go downhill pretty fast, and it did with my son as well. He was on Azathioprine at the time (after failing Pentasa) and ended up in the hospital for four days. Thankfully, IV antibiotics took care of the abscess, but he was started on Remicade during that visit because Azathioprine obviously wasn't working for him.

Quite honestly, I wish we would have skipped the Azathioprine (same as 6MP & Imuran) and gone straight to Remicade. He's been in remission ever since starting it and living a completely normal life now. He only thinks about his Crohn's for four hours every eight weeks when he gets his infusion. It has given him his life back. I feel like we wasted 6 months waiting for Aza to work... but it made our insurance company happy since they will only pay for the bottom up approach.

The risks are scary, but what I realized is that he needed to feel good TODAY. I won't say that there aren't risks, but after seeing the Remicade work, they seem very small now. Could he be the 4 in 10,000 that get cancer? Yes, possibly, but for now I just file that away in the back of my mind and enjoy the healthy days my son is having.

You asked about other options. There are the immune suppressors like Azathioprine, 6MP and Imuran. They all can take 3-6 months to work though. There is also methotrexate, which I am not very familiar with. And then of course, the biologics, Remicade and Humira. I believe the risk of cancer that you are likely reading about is referring to the combination of an immune suppressor AND a biologic, whether taken together or at different times. Then I believe the risk is 2 in 10,000 vs 4 in 10,000.

Whatever you decide to do, please keep in mind that undertreated disease can be far worse than the other risks. Since he's had (several?) abscesses already, that bumps him into the severe category where, like your doctor is recommending, biologics work best.

Keep us posted... *hugs*

 

[Maya142]

There's a good presentation linked on CCFA that discusses the risks and benefits on medications like Imuran and Remicade for IBD : http://www.ccfa.org/news/do-ibd-treatments-cause.html
With my daughter we were terrified at first to put her on biologics, but now could not be more thankful that they exist! At some point the disease becomes much scarier than the drugs.

 

[my little penguin]

Same here we take risks everyday
Car rides
Swimming
Tylenol
Etc...
All can lead to death in a child.
But no one is telling you what those risks are daily.

DS was on remicade for about 8 months and is now on humira plus Mtx.

The difference in what his daily life is now compared to 6-mp or Mtx alone is amazing.
Before he was in pain daily not growing not gaining .

Now he can do basically anything he did before the he was dx

 

[araceli]

My daughter had been on remicade for almost two years and it has been the miracle drug.
I know is a very scary and hard decision but I agree with everybody else, I am glad this drug exists and about the risks about not having crohn's under control. Sending HUGS and Support your way.

 

[Monnipenni]

I wasn't too worried about the increased risk of cancer until I saw it was higher in teens and young adult males. He's 18 and falls right in that category. Thanks so much for all the replies. Hopefully the GI will be by to see him tomorrow and discuss further.

 

[Maya142]

The most recent studies are showing that TNF inhibitors don't really increase the risk, but immunosuppressants like 6MP and Imuran (Azathioprine) do.

Concerns had been raised that TNF-alpha antagonists might increase cancer risk through their immunosuppressive effects, Dr. Andersen and colleagues note in their report. Three studies of the issue have been done in IBD patients, with negative findings, but very short follow-up periods.

In the current study, the researchers looked at IBD patients ages 15 years and older, including 4553 (8.1%) who had been treated with TNF-alpha antagonists. Their analysis included 489,433 person-years of follow-up, during which time 81 patients (1.8%) exposed to TNF-alpha antagonists developed cancer, and 3465 patients (6.7%) not exposed to the drugs were diagnosed with cancer. After Poisson regression analysis adjusting for age, calendar year, disease duration, propensity scores, and other IBD medication use, the relative risk associated with TNF-alpha antagonist use was 1.07, and not significant.

This is the article: http://www.medscape.com/viewarticle/826945
You need to make an account to view the whole article but it's free.

 

[Monnipenni]

The GI had mentioned remicade and imuran combo

 

[Monnipenni]

I didn't realize t the time that the risk was from imuran a well

 

[my little penguin]

The risk is really small and most if the studies show its not just teenage makes at risk anymore - but all groups
6-mp by itself has the risk

The risk is 6 in 10,000. When combined biologic plus immunosuppressant .
Most Gi stop the immunosuppressant after 6-months to a year .

This is suppose to reduce the risk of antibodies forming .

But once you have taken any immunosuppressant and later take a biologic the risk is still there regardless of whether you are currently taking it or not.

The risk for the average joe on the street without Ibd is 2in 10000.

I am sure the risk of cancer from under treated crohn's is a lot higher .

 

[afidz]

Sorry to hear that your son is sick right now, I can only begin to imagine what you go through as a parent.
I think its normal for everyone to be afraid of biologics, but there are some things to keep in mind...
The chances of cancer developing on a biologic are rare, ( I think I remembered hearing it was less than 20%) We are far more likely to develop colon cancer from untreated IBD than we are by treating it with a biologic. And not only are we at a higher risk for colon cancer, but untreated Crohn's can be fatal. As scary as they are, you have to weigh your options and really look at the big picture. I really hope your son feels better soon

 

[Maya142]

This is much much lower than 20%! 6 in 10,000 (0.06%) is the risk on an Anti-TNF and an immunomodulator (like Imuran).

http://programs.rmei.com/CCFA139VL/Slides.pdf

 

[afidz]

oh wow, I didn't know it was that low, thanks for the correction!!

 

[momofboy]

My 13 year old is on the combo 6mp and Remicade as his first line of treatment which was strongly recommended by his GI wanting to approach his Crohns with the top down approach. Though this was the hardest decision to make for my son, the complications that this disease can cause out weigh the "possible side effects" that the medications could cause. I have no reason to doubt what the expert (his GI) recommends and knows what works the best to get this disease under control before more damage happens and so that my son can get his normal teenage life back and that is what gets me through each day rather than worry about the what ifs of the treatment.

 

[AZMOM]

Everyone has said it WAY BETTER than I could. All that's left is :ghug: :ghug: :ghug: & let us know how it's going!

J.

 

[Tesscorm]

Ditto to all above. We all know how tough a decision it is... not an easy thing to accept. :ghug: But, as was said above, we accept risks all the time so that our kids' quality of life is at it's best - swimming, driving, sports, etc. These meds can give our kids their QOL back.

I also found it a bit difficult to really understand that my decision was not whether I was willing to accept the risks of the meds in order to alleviate his discomfort/pain (ie was eliminating the discomfort/pain worth the risk?) but, actually the choice was which risks was I willing to take - those from the meds or those from crohns?? Because, if I chose not to use the immunosuppressants/biologics and tried to go with an option with lower med risk, I was, in effect, choosing to take on the risks that might come with under- or untreated crohns.

Something else to consider... what does your son think about his diagnosis and treatment options? As my son seemed to be stable (ie no outward symptoms but with simmering inflammation) and these meds also scared me, I did very much want to try LDN (a med with minimal known side effects but limited studies on its use in treating crohns) before moving to remicade. My son's GI was adamant that remicade was necessary to get inflammation under control or my son could potentially be facing worsening symptoms and scar tissue/damage which could only be treated by surgery. As my son was 18, I felt he needed to be a big part of the decision as he would be facing the outcome of any decision... I gave him all the info I had on LDN, it's pros and cons as well as those with remicade... my son did not want to risk the consequences of undertreated crohns and chose to go with remicade. As neither of us has a crystal ball, I do not think he made the wrong decision - with the information we had, he made the decision to take on the risks with which he was most comfortable. Perhaps discussing this with your son and hearing how he feels crohns impacts his life (although, I have no doubt you see how it affects him :ghug, may help you come to terms with the necessity of treating crohns and getting it under control.

Hugs to you, these are not easy paths for us parents. :ghug:

 

[Monnipenni]

Finally talked to the GI last night and he wants to put him on remicade and imuran and stop the imuran after about 8 months. GI says the imuran is the real risk of lymphoma which is why he would discontinue use after 8 months. Apparently imuran keeps the body from making antibiodies to the the remicade. Has anyone tried just remicade alone and had success? I'm scared to death of the combination. Especially since he is young and male

 

[my little penguin]

The risk is already there since he has already taken Imuran period.
Young and male was just the first group identified the risk is still the same for all other groups . Please look at the papers on the combination therapy on the parents resource section.

Fwiw DS stopped Mtx and then started remicade without an immunosuppresant .
But within 8 months he had reacted twice to remicade and can no longer take it.

So in DS case it might have been better to take it with the Mtx .
Then he might still have humira to try later as it stands now he is out of drugs if humira fails since the other drugs are only approved for those over 18.

More than a few tried remicade alone but most had to switch when Athens without an immunosuppressant.


He is now on humira and Mtx .

 

[Maya142]

My daughter has been on several combinations, including Humira +MTX, Remicade + MTX and Remicade +Imuran.

She did really REALLY well on Humira/Remicade with methotrexate. We've only just started Imuran (plus Remicade) so not sure it's going to work, but I'm hopeful.

M has been on Remicade alone but it didn't help her much at all, so her doctor added MTX. However, there are some kids that do fine on just Remicade, but then do risk making antibodies to it.

 

[Sascot]

Sorry to hear you are having to make these decisions. It took me 6 months to make peace with starting the 6mp. Again it worried me that there is increase risk with adolescent males. Unfortunately needs must so we are just over a year on the 6mp - no side effects so far and it took the calprotectin levels from 600 to 80. Just praying it never causes anything serious. I haven't dealt with Remicade but have read lots of great success stories on here. Good luck with the treatment!

 

[araceli]

My daughter started on remicade alone. Never took Mtx. In remission as per scopes.
I must add that she had two signs of vasculitis in her fingers after infusion and one time 6 days after, we are in the process of finding why.

 

[Mehita]

My son has been on Remicade only for the last seven months and in remission for six of those. He was previously on Azathioprine, but his GI weaned him off that right away after starting Remicade (two weeks).

 

[Jmrogers4]

Remicade only for the last 6 months. His GI usually does a combo of MTX and Remicade but we had tried methotrexate alone previously and my son had a reaction. We talked about adding Imuran but decided to see if remicade alone would do the trick and it has so far.

 

[Monnipenni]

Just an update... A month later, he is still in the hospital. Had his first infusion of remicade two weeks ago and second dose tomorrow. Also on imuran and iv steroids. He is improving but not fast enough for my liking. GI thinks we will see a huge improvement after tomorrow's infusion. He also has very low hemoglobins and they are considering a blood transfusion if it doesn't improve. Anyone ever experience this??

 

[my little penguin]

DS was not hospitalized but it did take every bit of all three loading doses ( 6 weeks ) to get his vomiting to stop.
Hope you see an improvement soon.

 

[Sascot]

Glad things are improving. Hope the next infusion makes a big difference.

 

[theOcean]

I've had to get a blood transfusion before -- I had one as well as two iron transfusions the last time I was hospitalized because my hemoglobin was so low! It isn't a big deal, I promise. And it should hopefully help your son feel better. I really hope the Remicade works for him.