I need some advice on which medication

[nayna]

Hi everyone, my son is 12 and was diagnosed with crohn's at the age of 10. My son's paternal grandfather also had crohn's. He also took the drug 6-mp. He passed away at the age of 65 due from Lymphoma. my son is currently taking pentasa 6x a day 500mg each pill, Entocort also. My dilemma is my 12 year old son needs to start treatment with either 6-mp, metrotraxate, humira or remicade. I'm concerned with the side effects of lymphoma. I feel that if he got the genes from his grandfather, will he got the genes of the lymphoma also. I am struggling with this decision, from what I read of side effects the drug 6-mp is the worst. Is anyone in the same situation as me. Any help will be greatly appreciated. thank you :sign0085:

 

[my little penguin]

Biologics have less of a known risk for lymphoma compared to 6-mp
Not sure on Mtx.

 

[CarolinAlaska]

Sorry, thankfully I'm not in that situation. I feel for you and this decision, though, and I'll pray the Lord will guide you to the right and best choice for him, and give you peace.

 

[nayna]

Thank you

 

[izzi'smom]

Does your doc recommend any one over the others?

Malignancy is a real risk, and not just from the meds-colon cancer is a risk as well. It's such a difficult decision, especially with the family history you have.

Wishing you luck that whatever you choose works wonders and has no side effects!

 

[nayna]

This is what I'm struggling with, i read this for side effects. This piece of article was taken from medlineplus website.
"Taking mercaptopurine may increase the risk that you will develop a new cancer. Some people who took mercaptopurine to treat Crohn's disease or ulcerative colitis developed hepatosplenic T cell lymphoma (HSTCL), a very serious form of cancer that often causes death within a short time. Tell your doctor if you experience any of the following symptoms: stomach pain; fever; unexplained weight loss; night sweats or easy bruising or bleeding. Talk to your doctor about the risks of taking this medication."

 

[my little penguin]

T cell lymphoma has a risk for the normàl population of 2 in 10000
When taking both 6-mp AND biologics ( either together or at some point in the patient history ) 6 in 10000.

BACKGROUND & AIMS: Thiopurine therapy for inflammatory bowel disease (IBD) has been associated with increased risk for lymphoma. We estimated the relative risk of lymphoma in patients with IBD exposed to thiopurines and compared relative risk values derived from population-based studies with those from referral center-based studies. We investigated whether active use increased risk compared with past use, and whether sex, age, or duration of use affects risk of lymphoma.

METHODS: We searched MEDLINE, EMBASE, and Cochrane databases, as well as conference abstracts and international publications, for the terms "6-MP and lymphoma," "6-mercaptopurine and lymphoma," "thiopurines and lymphoma," "azathioprine and cancer and IBD," "azathioprine and malignancy and IBD," "azathioprine and lymphoma," and "lymphoproliferative and thiopurines." Pooled standardized incidence ratios (SIRs) and 95% confidence intervals (CIs) were estimated. The deviance statistic from Poisson models was used to calculate heterogeneity.

RESULTS: Eighteen studies (among 4383 citations) met our inclusion criteria. Overall, the SIR for lymphoma was 4.92 (95% CI, 3.10-7.78), ranging from 2.80 (95% CI, 1.82-4.32) in 8 population studies to 9.24 (95% CI, 4.69-18.2) in 10 referral studies. Population studies demonstrated an increased risk among current users (SIR = 5.71; 95% CI, 3.72-10.1) but not former users (SIR = 1.42; 95% CI, 0.86-2.34). Level of risk became significant after 1 year of exposure. Men have a greater risk than women (relative risk = 1.98; P < .05); both sexes were at increased risk for lymphoma (SIR for men = 4.50; 95% CI = 3.71-5.40 and SIR for women = 2.29; 95% CI = 1.69-3.05). Patients younger than 30 years had the highest relative risk (SIR = 6.99; 95% CI, 2.99-16.4); younger men had the highest risk. The absolute risk was highest in patients older than 50 years (1:354 cases per patient-year, with a relative risk of 4.78).

CONCLUSIONS: Compared with studies from referral centers, population-based studies of IBD patients show a lower but significantly increased risk of lymphoma among patients taking thiopurines. The increased risk does not appear to persist after discontinuation of therapy. Patients over 50 have the highest absolute risk of lymphoma per year on thiopurines, while men under 35 may also be a high risk group. More study is needed to precisely understand groups highest at risk. The risks of lymphoma and potential benefits of therapy should be considered for all patients with

From:
http://www.ncbi.nlm.nih.gov/m/pubmed/24879926/

 

[my little penguin]

Inflammatory bowel disease in children can be marked by aggressive disease both at presentation and over time. Risk stratification of individual patients may help identify when early biologic therapy is justified. Currently, combination biologic and immunomodulator therapy for moderate-to-severe Crohn's disease is the most effective treatment regimen. The clinician's conundrum arises from the recent understanding that rare but serious adverse events do occur with use of these strong immune suppressive drugs and may be more prevalent with combination therapy. An understanding of the natural history of Crohn's disease and ulcerative colitis and the benefits and risks of the current medical armamentarium is essential to provide optimal care for each child with inflammatory bowel disease

From
http://www.medscape.com/viewarticle/779246

Very good article but requires login( which is free)

 

[my little penguin]

Of 1374 patients (741 male; age at diagnosis 12.1 ± 4.0 years; 791 Crohn's disease [CD], 535 ulcerative colitis [UC], 48 IBD unclassified), we identified two patients who developed lymphoma (one Hodgkin, one anaplastic large cell), in 6624 patient-years of follow-up (mean duration follow-up 4.8 years per patient). Both patients were males (ages 12 and 18 years at time of lymphoma onset) and were receiving thiopurines but had not yet received biologics at the time of their cancer diagnosis. They were both treated with chemotherapy and are alive without cancer 32+ and 76+ months since diagnosis. The absolute incidence rate of lymphoma for patients having received thiopurines was 4.5 per 10,000 patient-years compared to the expected rate of 0.58 per 10,000 patient-years, with a standardized incidence ratio (SIR) of 7.51 (95% confidence interval [CI] 0.74–41.98).

Conclusions:
The overall risk of lymphoma in children with IBD is low, with only two cases seen in our hospital over a 30-year period. The lymphoma risk (as estimated by SIR) in children receiving thiopurines is comparable to that reported in studies of adults. While there may be an increased risk of lymphoma in children treated with thiopurines, the risk did not reach statistical significance in this large cohort. (Inflamm Bowel Dis 2011

From
http://onlinelibrary.wiley.com/doi/10.1002/ibd.21844/abstract

 

[nayna]

Thank you so much for this article, I just need to make the right decision. could you advise me of which drug i should try first?

 

[Chester31]

I would not like to say which drug you should try first - I think that has to be a decision that you make along with your family and your GI.
I can only talk from our experience - when my son was first diagnosed, almost 2 years ago, the drugs terrified us and we delayed starting him on anything stronger than EEN and Pentasa. Things have steadily declined and he has since tried (and failed) both Aza and 6mp. He is currently in hospital on EEN along with IV antibiotics, steroids, weekly Humira and will also be adding in methotrexate. Looking back I really wish we'd gone with a more aggressive approach at an earlier stage - the joys of hindsight! Yes the drugs are scary but so is uncontrolled Crohn's. Good luck with whatever decision you come to.

 

[positivemum]

I understand your concerns as it is one many of us face when deciding on these medications. Like Chester 31 we were worried about meds and did EEN and pentasa to start but were quickly on a course of steroids and Aza. He managed aza for 2 years until his lymphocyte count dropped too low so back to EN. A year later after scoping we were at risk of losing his bowel and have just done 11 weeks on steroids whilst introducing remicade. This has been the scariest but best decision we could make as he has some form of a life back, now 16. The remicade scares me but the alternative was even scarier.

You can only make the best decision at the time based on facts, child's condition and the GI advice which has been invaluable to us. try not to beat yourself up about the decsion as said in a previous post hindsight is a wonderful thing

Good luck with the path you choose

 

[Maya142]

This is a good presentation that talks about the risks and the benefits of IBD medications:
http://programs.rmei.com/CCFA139VL/

We went straight to Remicade + Methotrexate. 8 months after starting them, my daughter's scopes looked much better and biopsies showed barely any inflammation.
For what it's worth, she is now on Imuran (similar to 6MP) and hasn't had any side effects besides nausea. She's also been on biologics for years and hasn't had any of the scary side effects - no increase in infection or anything like that.

It's a hard decision to make and like Chester31 said, it's one you should make with your GI. What does he/she recommend?

Good luck!

 

[nayna]

Thank you all so much for your advice. I wish all of your kids heal quickly. I'm glad chester31 mentioned how she wished she should've started earlier with the harsher meds. That's what my doctor said too. he wants to start theses meds b4 he gets too sick. I'm glad now I joined this forum. It's so nice to know there's mom's out there willing to reach out and discuss the Crohn's disease our kids are dealing with, again thank you all so much.

 

[Mehita]

A couple other things to consider... your insurance company may require a bottom up approach (try and fail lesser drugs before approving the next one) and puberty. You're going to want to have his disease under control as best you can as he hits puberty so his growth isn't affected.

Personally, my son was just like Chester's child. Started with Pentasa, had a resection, wasted six months waiting for Azathioprine to work, abscess, fistula, and three hospital stays before starting Remicade. I, too, regret not starting Remicade sooner. I think if we had he never would have had surgery or the abscess and fistula. Hindsight!

DS has been in remission 16 of the 17 months that he's been on Remicade (occasional blips, but overall doing quite well).

In our case, the risk of cancer was one we were willing to take so that he could enjoy his present life, here and now, and we'd worry about the future IF it ever became an issue. Remicade gave my son his life back and you'd never know he'd been as sick as he was by looking at him now.

Of course, like the others have said, be sure to discuss with your GI since all cases are different. This was just our experience.

 

[nayna]

Thank you so much Mehita, I will definitely take your input. I appreciate every advice from all of your moms. It means a lot to me.

 

[crohnsinct]

Nayna, I can totally relate to your concern given the family history. It does put a slightly different spin on things but it doesn't change the need for stronger meds. I would point blank ask the doc which drug had the least chance of causing any lymphoma and try to go with that. Could you maybe get a consult with an oncologist who would be more familiar with lymphoma risks given family history?

In our family we have a history of bad livers. My mother has auto immune hepatitis, hubby has fatty liver and I have Gilbert's syndrome (pretty benign but it is a liver dysfunction of sorts). So when our doc said Methotrexate for T you can imagine my hesitation. I wanted Remicade like her sister But he got a liver specialist to talk with us about the risks and in the end it wasn't as bad as it sounded so we went with the mtx.