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

Hello @jgkc23 and welcome to Mayo Connect. You mention that you would like to change meds. I see from an internet search that the med you are currently taking can be used for many different disorders.

If you be able to share what digestive issues you have that might help me to find some other members to connect you with.

Hello, thanks for responding. I was diagnosed at the Mayo Clinic in about 1996 or 1997 with chronic severe ulcerative colitis. I was very close to having to have a colectomy but Dr. Tremaine wanted to try azathioprine first. I agreed. I had a recent colonoscopy performed by a GI doctor I had never met and did not know me. We moved to our new home from the Des Moines area in December 2019. This doctor suggested that the azathioprine was causing cancer and I needed to change my med and possibly have a total colectomy. Last year I had a squamous cell carcinoma removed from my upper chest and have had a few tiny basal cells removed from my arms and face. I have been searching the internet regarding if azathioprine does cause colon cancer and have found no evidence of that. I am allergic to sulfa so the sulfa drugs are not an option. I am meeting with my internist next week and discussing melasamine as a possible alternative. The new biologics are far too expensive for me and I am in the "donut hole" with Medicare. I appreciate you taking an interest in my issue. Again, thanks for responding.

@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!

Hi jgkc23,
About the expense of biologics: Please don't give up on a medication class that might improve your health because you think it is too expensive. There may be ways to pay for it. And among your medication options, there may be one that is covered.

Have you heard about these possibilities?:

Your doctor or his/her office staff should know about ways to get medications paid for. My advice is to see what biologics your doctor suggests and then let them help you see how to pay for one of them, or find some way to get someone else to pay for it for you. My doctor and her staff have been knowledgeable and helpful about paying for meds.

Medicare Part B (not the drug Part D) may pay for a biologic that you have to get in the doctor's office-- like the infused IV biologics. Part B doesn't pay for at-home shots. Maybe there is an infused IV biologic that will work for you. I think your doctor/staff should know about this option.

This is very helpful. A SHIP advisor from your state can give advice on Part D plans and which medications are on different formularies.

Sometimes the pharmaceutical companies will provide the medication for FREE or at a reduced cost.

There are philanthropic organizations that will help with the cost, too. Try doing a google search of your disease to find names of organizations, then search the site for financial support.

If you have a medicare Supplement/GAP or Advantage Plan, it might give you access to nurses who may be able to help you find resources. Hey, you've paid for the plan, so take advantage of the resource. My plan just sent me a notice that they have nurses who help find resources. I haven't tried it yet myself, but I plan to do so. On a side note, the notice didn't indicate that their nurses could actually give medical advice!

If you have already heard about these options, I'm sorry. I hope this doesn't sound too bossy. I hope these ideas have been helpful!

Good luck and I hope you feel better.

Hey, thanks for the info. I did not know about the in-hospital/infusion lab information. Looking at the side effects of some of the medications out there for ulcerative colitis makes me shiver. Some seem worse than the side effects of the azathioprine! I do appreciate all of the information you shared with me. Thanks again.

You're very welcome! We all have to stick together. This chat board is great.

Yeah, side effect lists can be ... alarming. It's all risk-benefit. I waited (in pain) for about 3 or 4 years before starting biologics. I waited until the potential benefit seemed worth the risk. Some of the risks that they include are really, really low or they primarily apply to specific populations.
And the biologics did help my autoimmune disease, which mostly affects my spine and joints. I was able to keep working for another 5 or 6 years while I was on them. I was a teacher; I loved my job and I really miss it.

Keep us posted : )

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.

Hi catherine1290,
What is pancytopenia? How is it diagnosed? Is there a blood test?
Thank you!

It shows up on a routine CBC. Pancytopenia is when both your platelets and leukocytes go down low.

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!