1. < Digestive Health

Has anyone been on azathioprine (Imuran) for a very long time?

Posted by jgkc23 @jgkc23, Nov 9, 2023

I have been on the lowest dose of azathioprine (Imuran) for 28 years and in remission. This year's colonoscopy showed two polyps besides the usual pseudopolyps. I have experience some squamous cell carcinoma this past year. I want to change to a different medication - allergic to sulfa - with perhaps fewer side effects. I want to keep my colon but want to know if you changed from the azathioprine to another drug and had good results. Thanks.

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jgkc23 | @jgkc23 | Nov 12, 2023
In reply to @catherine1290 "I was on it for 3 months and it gave me severe pancytopenia. They switched me..." + (show)
@catherine1290

I was on it for 3 months and it gave me severe pancytopenia. They switched me to Stelara and I'm doing fine with my Crohn's. Platelets have never gone back to normal level 4 years later.

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Hi, Catherine. I seem to have the opposite issue where my platelets have been extremely high. I wish you the best.

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annewoodmayo | @annewoodmayo | Nov 12, 2023
In reply to @jgkc23 "Thank you so much. I did research the Medicare.gov Part B about infusions that require you..." + (show)
@jgkc23

Thank you so much. I did research the Medicare.gov Part B about infusions that require you to be at an infusion facility or hospital for those that take more than 31 min. I will be checking in with them this week as well as with my doctor about this. My Advantage plan will not pay for the infusion but will pay a portion of the Entyvio injections but it would cost me over $40,000/year out of pocket. No can do. Thanks so much for the info!

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Please keep us posted on what you learn...
And GOOD LUCK! 🙂

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jgkc23 | @jgkc23 | Feb 7 2:19pm
In reply to @astaingegerdm "@jgkc23 I was on Imuran for several months for another form of GI autoimmune illness. I..." + (show)
@astaingegerdm

@jgkc23
I was on Imuran for several months for another form of GI autoimmune illness. I had to stop it because I got so many infections.
In your case it’s great that a low dose has kept you healthy.
I believe that many of the immunosuppressive drugs can cause cancer- it prevents our immune system to fight cancer.
You mentioned skin cancer- I have had more than my share of skin cancers since the Imuran treatment.
They do mention that prolonged use can cause skin cancer and lymphoma.
Regarding the cost of other newer biologics does Medicare cover any? I’m also in the hated donut hole.
See what your Internist recommends and don’t go off Imuran abruptly without plans for another drug. Good luck!

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Thanks for your note. No, my Medicare Advantage plan will not pay for any biologics. They are terribly expensive. My new GI dr is leaving me on it for now. Recent colonoscopy showed one precancerous nodule. More pseudopolys - which are part of ulcerative colitis as we get older. Pseudopolyps will never become cancerous. They usually start in your 50's - just a few and recently more. Thanks again for your comment.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 7 5:52pm

@jgkc23
It’s a good thing that you have not needed a colectomy.
Can you get another opinion?

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1 reply
jgkc23 | @jgkc23 | Feb 7 6:28pm
In reply to @astaingegerdm "@jgkc23 It’s a good thing that you have not needed a colectomy. Can you get another..." + (show)
@astaingegerdm

@jgkc23
It’s a good thing that you have not needed a colectomy.
Can you get another opinion?

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I don't think I need second opinion at this time. I don't plan on ever having my colon removed. I have been through breast cancer twice and chemotherapy for six months following the second time. At my age I really do not want the huge lifestyle change if a colectomy comes about. I am symptom free at this time and hope to remain so into the near future. Thank you for checking in.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 7 8:17pm

@jgkc23
I understand.
I also had 6 months of chemo for breast cancer. Some years later I developed a rare form of GI autoimmune disease secondary to the chemo. Imuran took care of it. I have only had brief recurrences since.

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