my experience with azathioprine
As I am still in the phase of trying to find medication for Crohn's Disease that work for me, I got to try out Azathioprine for about three months now. I had to recently stop though and am continuing with a TNF blocker (Infliximab).
I was started on 25mg which slowly increased by 25mg each week, with weekly blood tests to make sure my liver and kidney are fine, my white blood cells don't drop too low, and there is no bone marrow depression going on. Noteworthy: I wasn't TPMT tested (a test to determine how much of an enzyme I have that I need for the medication). This is usually standard in other countries it seems but apparently 5% of people affected by no or low presence of the enzyme needed to process the medication correctly is deemed too low to test for it here and is accounted for by gradually going up and better monitoring.
I noticed some slight improvements already at 50mg. The dose at which you are usually expected to feel a difference is 100mg and after roughly 6 weeks, though. I was lucky - I initially did not have any nausea or vomiting. I had some bone pain, kidney pain and headaches with each dose increase for a day or so and it went away. I then went up to a maximum of 175mg. Unfortunately, the hair loss I already had from being hospitalized and losing a lot of blood plus potentially as a side effect from Prednisone started increasing dramatically on it. It's still ongoing, but slowing down, I think.
There were a few days in between when I was really worried because I suddenly had a lot of bone pain and kidney pain (these are warning signs you should look out for in the package leaflet), and my doctor even squeezed me in as an emergency to see him; but it went away on its own. In retrospect, I do think it was the Azathioprine; my body seemed to have phases when it really sucked at processing it, I think. Or maybe it accumulated weirdly every few weeks.
After a while of peace and quiet, I suddenly developed extreme vertigo; everything was spinning every few seconds. I stopped taking it for a day and it went away, then 100mg, then 150mg and stayed there because after a while, I guess the 175mg were too much. They were slightly overdosed for my weight anyway.
I felt the best so far on 150mg Azathioprine and 10mg Prednisone symptom-wise (basically completely healthy!), but obviously, I still needed to taper down from the Prednisone. Sadly it turned out that without the Prednisone, some of the symptoms came back (so the Azathioprine alone seemed to not do enough) and then it also started harming me. In the Prednisone post I made, I was still convinced the symptoms I had were Prednisone withdrawal during tapering and adrenal insufficiency from 6 months of use after stopping it completely, but taking some didn't help. I had started having arthritis in several joints, intense nausea, headaches, complete loss of appetite and no energy. I was just in bed, rotting, unable to do anything.
After about two weeks, I made the decision to stop taking Azathioprine and see if I felt better. It was the right decision - I improved. It turns out my blood work also started not looking that good and my doctor was in full support of me switching to something else, thankfully. I think if my only issue were liver issues or other processing issues, we would have switched to Mercaptopurine, but since it didn't address all my Crohn's symptoms without an accompanying steroid, we switched away from the traditional, tablet based DMARDs altogether.
It was a little scary being off of it for a while until I could start new treatment (thankfully just a week!) and it was disappointing that this one didn't work. But on the other hand, the Azathioprine did end the severe flare I was in since March 2024 and allowed me to taper and go off of the Prednisone. Without it, I was stuck at 50mg Prednisone and whenever I tried to lower, severe symptoms would emerge instantly. Now without any of it, I have the symptom severity of November 2023 to February 2024, which is doable, but of course I went to the gastroenterologist in March to have those symptoms addressed and treated, not enter a mega flare, be hospitalized, and then end up back where I started. I am now hopeful that one of the biologics can help me. It's the second day after my first infusion as I am writing this, and it's already helping a lot with some extra-intestinal symptoms I have (skin rashes).
Published 01 Sep, 2024, edited 2Â weeks, 1Â day ago