Humira + imuran or LDN. Concerned about risks

[LaurenB89]

I was just recently diagnosed with Crohn's in March 2015 after a bout of upper stomach pain. After a scope and MRE, doctors can see that I have some inflammation in my terminal ileum and a small fistula next to it. I also had a nodule of inflammation in my colon. Doctors want me to start Humira and Imuran. I am absolutely refusing Imuran period based on the research I've seen concerning HTCL. Yeah, no thanks. I'm still considering doing Humira on its own. I would like to try LDN but finding a doctor who will do it is difficult. I'm currently on Pentasa and have had no symptoms since I was put on the medicine over 2 months ago. Does anyone have any experience with LDN healing a fistula? Am I a dumb-dumb for being so hesitant about Humira? I can't find anything about the long term safety of biologics. I don't want to take these and think I'm fine for 5-10 years and then one day receive a terminal cancer diagnosis. Thank you for any and all advice.

 

[nitty]

Hi! I totally understand your reluctance to take the higher end drugs, but you also need to look at things from a different angle.

People get hung up on the potential side-effects of medicines, and that is very reasonable. But you also need to consider the 'side-effects' of uncontrolled disease. You already have a small fistula - what if that gets worse or you get other ones? Long-term inflammation is also a significant contributory factor in getting bowel cancer.

The problem with this disease is that it can be quietly eroding away inside without you being aware of any symptoms, until suddenly you hit a crisis point.

I struggled on for some time while I resisted taking anything other than mesalazine. I then hit rock bottom and was practically begging for steroids and Imuran. I have been on Imuran for nearly three years now without any problems related to it. I am currently in a mild flare because I tried coming off the mesalazine, so I need to get back onto that again.

I am by no means dismissing your concerns. Nobody on this forum takes any of these medications lightly - that's why there's so many threads about them. All I am saying is that you need to consider the risks of not taking them, too.

I have no experience of LDN myself, but you will find others who have elsewhere on this forum, and I'm sure there will be other forummers who can give their opinions on the pros and cons of different treatment options.

Good luck with whatever you decide. I'm sure you'll have loads more questions and you'll get plenty of support here.

 

[ncman]

I’ve not found many doctors to promote it, but as it's Crohn's, have you looked into using diet i.e. enteral nutrition to get into remission, followed by an exclusion diet to stay there?

Whichever option you choose, the main thing to do is get your inflammation under control, as it’s the uncontrolled inflammation that leads to more complications.

 

[24601]

I think it's very important to consider the risks of uncontrolled Crohn's - and especially bearing in mind that you already have complicated disease with the development of a small fistula putting you at greater risk of perforation and infection and the need for surgery.

I think that because risks like cancer are a concern that we often already have that we focus on those. It feels like a more familiar worry than the risks of Crohn's. It's also easier to put numbers on the risk of developing cancer from these meds - but the good news is that the risk is low.

I'm going to borrow from another thread to quote some statistics:

The funny part about Ibd meds is they have to tell you the scary risks
But most docs are only going to prescribe a new to a patient when the benefits outweigh those risks
To put things in better perspective

Risk of death by car 1 in 250
By drowning 1 in 1000
To get T cell lymphoma for non Ibd person walking on the street 2 in 10000
Risk for Ibd person who at one point took both meds 6 in 10000

Leaving inflammation to simmer gives you a higher risk of lymphoma just from having untreated or under treated Ibd

Good luck

Also Maya142 recently suggested this presentation on IBD meds and risk: http://programs.rmei.com/CCFA139VL/

Your concern is understandable and many of us have been there, frightened of making this decision, but studies show that "top-down" therapy leads to the best longterm prognosis for Crohn's patients and since you are already in the group of patients with complicated disease I personally would have no hesitation going with Humira. And I would add an immunomodulator to decrease production of antibodies.

Good luck with your decision! Hope you find a treatment that works well for you and gives you a long remission!

 

[my little penguin]

You may want to chose Mtx over 6-mp when combined with a biologic
Slightly less risk

But I can say my kiddo has been on biologics and immunosupressants since age 8
He is now 11.
No issues
Control disease is key
Some can't go by symtpoms which makes the disease more scary
If it was on the outside say your skin
You wouldn't hesitate to treat it.
We looked into LDN for DS
Most studies were done at least on kids who were very mild ( no fistulas ) and only needed a bump in therapy.
DS GI was willing to try it if we wanted but honestly after seeing the good biologics have done for DS I am glad we chose that path .

 

[LaurenB89]

Thank you so much for your replies. I am trying more and more to put this in perspective. It's so hard to go from being fine 6 months ago to now still feeling fine but having to start heavy therapy. I was somewhat of a hypochondriac before all this started (which is embarrassing to think about) so to tell me that I have to go on something like this is terrifying. I cried for five hours last night just thinking about it. I have asked for anxiety medication to help with this. I am a scientific study person, so any and all links to studies showing how tiny these risks truly are would be soooo appreciated. Thank you for taking the time to read this. Has anyone been on these drugs for 10 years? Since this is for life, I'm wondering how common it is to stay on these continously long term.

 

[24601]

Hi!
It is a lot to deal with and I think so many of us struggle with the idea of these risks even without pre-existing health anxiety so that must make it extra hard.

This paper talks about the risks, as well as getting the best effect from biologics (minimizing antibodies by combining with an immunomodulator, monitoring antibody and drug levels)

Here's the bit about risks for anyone who doesn't want to read the whole thing:

"One of the biggest concerns with combination therapy is the potential for increased adverse outcomes, notably severe infection and malignancies. However, no incremental increase in the odds of serious infections was actually seen with any dual therapy combinations over monotherapy in a study querying the FDA Adverse Event Reporting System (FAERS) [Deepak et al. 2013]. It is more difficult to truly calculate the risk of lymphoma with combination therapy since most studies are not powered to detect this relatively rare event. A meta-analysis including 9 RCTs, 3 cohort studies and 14 case series with 66% of patients concomitantly taking anti-TNFs and immunomodulators calculated a rate of non-Hodgkin’s lymphoma of 6.1 per 10,000 patient-years in patients taking combination therapy compared with a baseline 1.9 per 10,000 patient-years, with a standardized incidence ratio of 3.23 [Siegel et al. 2009]. In 2006, the FAERS was alerted to eight cases of the aggressive and usually fatal hepatosplenic T-cell lymphoma (HSTCL) associated with infliximab use in young patients receiving treatment for inflammatory bowel disease (IBD), prompting the FDA to add a boxed warning [Mackey et al. 2007]. Since then nearly 40 cases have been reported in CD patients, the majority occurring in young males (mean age at diagnosis was 30). Of the patients who were treated with anti-TNFs, 96% had been exposed to anti-metabolites [Selvaraj et al. 2013]. To date, no cases of HSTCL have been identified in patients on combination therapy with MTX."

There are certainly people on the forum who have been on Remicade for 10 years - but concomitant use of an immunomodulator greatly increases the chance of being able to stay on a biologic for a longer time. See this paper http://www.ncbi.nlm.nih.gov/pubmed/25911120?dopt=Abstract

Hope those papers help you and pursuing some treatment for anxiety sound really positive too

Lots of luck! :ghug: