Advice please .

[Alley27]

Hi could I please ask everyone who is taking Azathioprine their experiences on this drug. Their starting doses both on steroids and off steroids, the best time of day and the best way of taking them to prevent sickness and nausea. Also, how long it took for their body to adjust to Azathioprine. Thanks x I know we are all different but my nausea after my first dose of 100mg was debilitating. Thanks xx

[Jennyhadenough]

I started with 40 mgs of prednisone and 1000 mgs of Urso

I did get diagnosed with a GI dr who prescribed my prednisone wrong for aih diagnosis.

I went to the Mayo Clinic for a second opinion who discovered the error.

I had to take prednisone for over two years.

When my alt was in normal range I started azathioprine. I got sick at first. I had to take it on a full stomach. I remember lots of upper abdominal pain at first too.

The nausea and vomiting lasted 2 months.

I’m fine now. I was weened off my last prednisone/budesonide 7 weeks ago. I took prednisone and one Urso with breakfast and I took my other Urso with azathioprine with dinner. I started azathioprine at 50 mgs and after time it was raised to 100mgs.

I had my blood draw on Friday. If all goes well I will stay off the prednisone/budesonide

You can message me if I confused you.

But sleep was an issue along with weight gain while taken prednisone but my numbers went down to normal fast

[Bunter]

I was diagnosed with PBC in January 2006 and started taking 1000mg URSO. In October 2006 I developed jaundice, was diagnosed with PBC/AIH and prescribed a high dose of prednisolone which was gradually reduced. In February 2007 I started on azathioprine in addition to prednisolone. Initially I took 25mg azathioprine in the morning and 25 mg in the evening which was gradually increased to 125 mg a day. Eventually blood test results returned to almost normal, azathioprine was reduced and I was weaned of the steroids but continued to take azathioprine (75mg) I have never experienced any nausea or sickness due to azathioprine.

In 2015, as my blood test results had been normal for years and because azathioprine is not normally used to treat PBC, I was weaned off azathioprine. Unfortunately LFTs then went haywire and I had to go back on azathioprine, initially taking 50 mg a day. I did not suffer any nausea. Unfortunately LFTs continued to fluctuate and I had to take prednisolone again. LFTs are now normal and I am taking a very low dose of prednisolone on alternate days with a view to coming off them when I can next see a consultant. I take 75 mg azathioprine which I take with/ straight after breakfast.

Sorry this is a rather long reply but hope it is of some help.

[jane1964 in reply to Bunter]

Hello your experience with azathioprine is very interesting I have pbc my liver function tests were abnormal for more than 5 years despite urso getting higher then I was diagnosed with MPO ANCA vasculitis another autoimmune condition and started on azathioprine my liver function tests were improved and are now normal and have been for last 2 years on 150mg of azathioprine a day.

[tea46]

I have been on Azathioprine 100mg for 18 months for AIH with overlapping PSC . I struggled with nausea and vomiting during weeks two and three. I tried splitting the dose and taking half in the morning and half in the evening and improved considerably but I still suffered occasional bouts of nausea . It was about week six when I felt that I was fully tolerating it. I found that taking it after my evening meal worked for me. It no longer causes me any problem..

[Alley27 in reply to tea46]

Hi, thanks for your reply. I have been taking 50mg with breakfast. I usually have porridge so I eat half, take the Azathioprine and eat the other half. I will increase it at the weekend. Consultant agrees with me to increase on tolerance.

[tea46 in reply to Alley27]

I hope you soon develop a tolerance. I am sure you will. I remember the sheer misery of the early days when it felt as if the suffering was going to go on forever.