Hi everyone,
I'm a 31M with Crohn's diagnosed ~10 years ago. For the majority of that time I've been on a combination of azathioprine and the specific carbohydrate diet (SCD). My current gastroenterologist recommended discontinuing azathioprine due to lymphoma risk in younger men and transitioning to Stelara. I spoke with another gastroenterologist and they recommended transitioning from azathioprine to Humira rather than Stelara. I'm unsure on how to proceed from here and would be grateful for anyone's perspective that has been in a similar position or any other resources that could be helpful.
A little more background on my experience:
-Memory is a little hazy at diagnosis, but I recall major symptoms being bloody diarrhea ~4x/day, urgency and cramping, weight loss, and loss of appetite.
-First colonoscopy was done in 2008 and found inflammation in the terminal ileum. Was put on a course of prednisone and felt much better. Was prescribed Pentasa while tapering off prednisone and symptoms returned
-Second colonoscopy was done in 2008 and found inflammation in the terminal ileum and the rectum. Was put on a second course of prednisone, but did not have the same level of symptom relief as the first course. Was also prescribed azathioprine (175mg/day). At that time I was told there was a rare, albeit significant increased risk of lymphoma for those taking azathioprine.
-Was on azathioprine for ~6 months with no noticeable improvement in symptoms when the gastro recommended transitioning to Humira. At that point I looked into alternative treatment options and started the SCD. I had immediate symptom relief after starting the SCD; bloody diarrhea stopped, BM frequency dropped to ~1/day, appetite returned and weight stabilized.
-In 2009 I graduated from college so I ended up seeing several different gastroenterologists as a result of moving around (college, home, leaving home for a job) and they all concurred that azathioprine was helping and that diet was not relevant. I did not feel 100% (was told I would always feel "a little Crohnsy"), but decided to remain on azathioprine + SCD as my quality of life relative to when I was first diagnosed had improved dramatically and I did not want to disrupt whatever was working.
-Between 2010 and 2015 I did not have any major episodes. I saw a few different gastroenterologists during that time after switching locations due to work, but did not have any diagnostics done outside of bloodwork (CRP was normal) and a visit with the gastro 1-2 times per year where they pressed on my abdomen. At some point during this time I tapered azathioprine down from 175mg/day to 150mg/day as 175mg/day seemed high for a weight based dose and I was skeptical whether azathioprine was adding any benefit. I did not notice a change in symptoms after tapering down.
-In 2016 my current gastro recommended doing a colonoscopy due to an increased risk of colorectal cancer after 8+ years since diagnosis. The colonoscopy did not showed Crohn's in remission with no inflammation. She also did an upper endoscopy because I was complaining about reflux and it found mild gastritis, but my gastro was unconcerned. I also had a CT scan done on the small bowel and everything was normal.
-After the colonoscopy in 2016 my gastro recommended discontinuing azathioprine due to lymphoma risk and transitioning to another drug. This seemed odd to me as I was aware of and had accepted the lymphoma risk. I explained that I was not totally convinced azathioprine was adding any benefit so she agreed to try tapering azathioprine and managing using SCD alone. I have since done some research on found that studies suggest azathioprine is not effective at inducing remission, but can be effective in maintaining remission so I am more open now to the possibility that azathioprine was providing some benefit.
-I started tapering 1/1/2017 from 150mg/day to 100mg/day. I did not notice any changes in symptoms until the end of 2017. I had a course of antibiotics (Amoxicillin) in Nov 2017 after having some dental work done and then started to experience symptoms in Dec 2017. Symptoms were not as bad as when I was originally diagnosed, but had some diarrhea/urgency, weight loss and a tenderness in the upper right quadrant of my abdomen (presumably where the terminal ileum is?)
-I was planning to taper azathioprine from 100mg/day to 50mg/day as of 1/1/2018, but kept at 100mg/day because I was symptomatic. Later in 2018 I had a colonoscopy done, which found mild inflammation in the terminal ileum, but no inflammation in the colon/rectum. Bloodwork done in June 2018 showed normal CRP (0.5mg/L), although I don't recall any time where it was not normal (unsure of what it was at diagnosis). I also had fecal calprotectin measured, which was slightly elevated at 143ug/g (I never had this measured previously so I do not have a basis for comparison)
-My current gastro recommended discontinuing azathioprine and transitioning to Stelara due to lymphoma risk and because I was symptomatic on azathioprine. My concerns were (1) azathioprine dosage at 100mg was below the weight based guidelines so it seemed hard to draw a conclusion on efficacy in my case, (2) Stelara carries its own risks despite being less significant than azathioprine, (3) unclear whether Stelara would be effective in my case and (4) I'm on an HSA-qualified high deductible plan with a $4,500 deductible, so Stelara would represent a significant cost increase and I would not qualify for any copay assistance (at least that I'm aware of). My gastro did not really address these concerns other than reiterating her recommendation due to safety and suggesting I get better insurance.
-As of the end of August 2018 I discontinued azathioprine and have on the SCD only with no drug treatment. Relative to the start of 2018 my symptoms had improved (prior to discontinuing aza). For the most part the only symptoms I've been experiencing are tenderness in the upper right quadrant of my abdomen and occasionally finding it difficult to sleep. My stool quality is not amazing, but I generally have 1 BM per day that is well formed, weight and appetite are stable. My current symptoms are tolerable so I am more concerned with potential long-term complications if I remain mildly symptomatic. I have not noticed any deterioration in symptoms since discontinuing azathioprine ~4-5 months ago.
-I had a second opinion in late 2018. The other gastro recommended discontinuing azathioprine (they don't think it was working, but did not have a good response to the weight based dosage question) and recommended Humira rather than Stelara due to it being faster acting and a longer history of treating Crohn's patients. They also ordered bloodwork and a stool test that I had done earlier this week, which I'm awaiting results on.
I'm unsure on where to go from here and how to weigh resuming azathioprine at an adequate dose vs. transitioning to Stelara or Humira. I've done some research (primarily on Stelara), and if I'm reading the Stelara UNITI study correctly they defined success as CRP below 3.0mg and fecal calprotecting below 250mg, both of which I had earlier in 2018 when measured, so I'm also wondering how necessary the biologics are if my inflammatory markers remain mild (TBD on the latest testing).
I realize my disease course to date has not been as severe as some others with Crohn's and feel fortunate that I still have a variety of different treatment options to explore.
Thank you for taking the time to read my post and I'm thankful for any advice offered.
I'm a 31M with Crohn's diagnosed ~10 years ago. For the majority of that time I've been on a combination of azathioprine and the specific carbohydrate diet (SCD). My current gastroenterologist recommended discontinuing azathioprine due to lymphoma risk in younger men and transitioning to Stelara. I spoke with another gastroenterologist and they recommended transitioning from azathioprine to Humira rather than Stelara. I'm unsure on how to proceed from here and would be grateful for anyone's perspective that has been in a similar position or any other resources that could be helpful.
A little more background on my experience:
-Memory is a little hazy at diagnosis, but I recall major symptoms being bloody diarrhea ~4x/day, urgency and cramping, weight loss, and loss of appetite.
-First colonoscopy was done in 2008 and found inflammation in the terminal ileum. Was put on a course of prednisone and felt much better. Was prescribed Pentasa while tapering off prednisone and symptoms returned
-Second colonoscopy was done in 2008 and found inflammation in the terminal ileum and the rectum. Was put on a second course of prednisone, but did not have the same level of symptom relief as the first course. Was also prescribed azathioprine (175mg/day). At that time I was told there was a rare, albeit significant increased risk of lymphoma for those taking azathioprine.
-Was on azathioprine for ~6 months with no noticeable improvement in symptoms when the gastro recommended transitioning to Humira. At that point I looked into alternative treatment options and started the SCD. I had immediate symptom relief after starting the SCD; bloody diarrhea stopped, BM frequency dropped to ~1/day, appetite returned and weight stabilized.
-In 2009 I graduated from college so I ended up seeing several different gastroenterologists as a result of moving around (college, home, leaving home for a job) and they all concurred that azathioprine was helping and that diet was not relevant. I did not feel 100% (was told I would always feel "a little Crohnsy"), but decided to remain on azathioprine + SCD as my quality of life relative to when I was first diagnosed had improved dramatically and I did not want to disrupt whatever was working.
-Between 2010 and 2015 I did not have any major episodes. I saw a few different gastroenterologists during that time after switching locations due to work, but did not have any diagnostics done outside of bloodwork (CRP was normal) and a visit with the gastro 1-2 times per year where they pressed on my abdomen. At some point during this time I tapered azathioprine down from 175mg/day to 150mg/day as 175mg/day seemed high for a weight based dose and I was skeptical whether azathioprine was adding any benefit. I did not notice a change in symptoms after tapering down.
-In 2016 my current gastro recommended doing a colonoscopy due to an increased risk of colorectal cancer after 8+ years since diagnosis. The colonoscopy did not showed Crohn's in remission with no inflammation. She also did an upper endoscopy because I was complaining about reflux and it found mild gastritis, but my gastro was unconcerned. I also had a CT scan done on the small bowel and everything was normal.
-After the colonoscopy in 2016 my gastro recommended discontinuing azathioprine due to lymphoma risk and transitioning to another drug. This seemed odd to me as I was aware of and had accepted the lymphoma risk. I explained that I was not totally convinced azathioprine was adding any benefit so she agreed to try tapering azathioprine and managing using SCD alone. I have since done some research on found that studies suggest azathioprine is not effective at inducing remission, but can be effective in maintaining remission so I am more open now to the possibility that azathioprine was providing some benefit.
-I started tapering 1/1/2017 from 150mg/day to 100mg/day. I did not notice any changes in symptoms until the end of 2017. I had a course of antibiotics (Amoxicillin) in Nov 2017 after having some dental work done and then started to experience symptoms in Dec 2017. Symptoms were not as bad as when I was originally diagnosed, but had some diarrhea/urgency, weight loss and a tenderness in the upper right quadrant of my abdomen (presumably where the terminal ileum is?)
-I was planning to taper azathioprine from 100mg/day to 50mg/day as of 1/1/2018, but kept at 100mg/day because I was symptomatic. Later in 2018 I had a colonoscopy done, which found mild inflammation in the terminal ileum, but no inflammation in the colon/rectum. Bloodwork done in June 2018 showed normal CRP (0.5mg/L), although I don't recall any time where it was not normal (unsure of what it was at diagnosis). I also had fecal calprotectin measured, which was slightly elevated at 143ug/g (I never had this measured previously so I do not have a basis for comparison)
-My current gastro recommended discontinuing azathioprine and transitioning to Stelara due to lymphoma risk and because I was symptomatic on azathioprine. My concerns were (1) azathioprine dosage at 100mg was below the weight based guidelines so it seemed hard to draw a conclusion on efficacy in my case, (2) Stelara carries its own risks despite being less significant than azathioprine, (3) unclear whether Stelara would be effective in my case and (4) I'm on an HSA-qualified high deductible plan with a $4,500 deductible, so Stelara would represent a significant cost increase and I would not qualify for any copay assistance (at least that I'm aware of). My gastro did not really address these concerns other than reiterating her recommendation due to safety and suggesting I get better insurance.
-As of the end of August 2018 I discontinued azathioprine and have on the SCD only with no drug treatment. Relative to the start of 2018 my symptoms had improved (prior to discontinuing aza). For the most part the only symptoms I've been experiencing are tenderness in the upper right quadrant of my abdomen and occasionally finding it difficult to sleep. My stool quality is not amazing, but I generally have 1 BM per day that is well formed, weight and appetite are stable. My current symptoms are tolerable so I am more concerned with potential long-term complications if I remain mildly symptomatic. I have not noticed any deterioration in symptoms since discontinuing azathioprine ~4-5 months ago.
-I had a second opinion in late 2018. The other gastro recommended discontinuing azathioprine (they don't think it was working, but did not have a good response to the weight based dosage question) and recommended Humira rather than Stelara due to it being faster acting and a longer history of treating Crohn's patients. They also ordered bloodwork and a stool test that I had done earlier this week, which I'm awaiting results on.
I'm unsure on where to go from here and how to weigh resuming azathioprine at an adequate dose vs. transitioning to Stelara or Humira. I've done some research (primarily on Stelara), and if I'm reading the Stelara UNITI study correctly they defined success as CRP below 3.0mg and fecal calprotecting below 250mg, both of which I had earlier in 2018 when measured, so I'm also wondering how necessary the biologics are if my inflammatory markers remain mild (TBD on the latest testing).
I realize my disease course to date has not been as severe as some others with Crohn's and feel fortunate that I still have a variety of different treatment options to explore.
Thank you for taking the time to read my post and I'm thankful for any advice offered.
