Patient Stories

Here is the first of our patient stories. Carol explains how she came to be diagnosed with AIH and her experiences of initial treatment with prednisolone and then her switch to a newer steroid medication called budesonide. We will continue to update it.

Carol’s Story

How it Started
I guess it all started in August 2014. After discovering I was BRCA2,  I opted for preventative surgery to remove my ovaries and tubes and had the surgery mid August. In the October I started to experience aching joints and overall fatigue, decided to approach the doctor to see if I could attend the menopausal clinic as I had been told of the possible symptoms I may experience due to the body sudden removal of oestrogen.The doctor decided to do some blood tests to rule out other possibilities.My LFT test showed a slight abnormality and was requested to repeat test in six weeks time.The doctor told me that this was not unusual after having had an operation.
The next LFT test revealed that some of my scores had more than doubled, I had anticipated this as symptoms had not disappeared and that I was struggling to stay awake most days and my energy levels were non existent, I had also started to experience pain high up under my rib cage on both sides and had started to become breathless.Another blood test was requested in the next month, hours after the test I received a call from lab saying that I should make my way to the nearest hospital as my results showed that a few of the markers were over 700 They asked how I felt and it was agreed that I should see a doctor first thing. I was asked if I took drugs, if I had a tattoo recently or if I drank excessively, they suspected hepatitis and bloods would be sent off asap to confirm, however all results came back negative.The doctor requested that I be seen by a liver specialist and in mean time take it easy and if I became unwell or turned yellow to make my way to A & E, I must say I was terrified.
Four days later I turned bright yellow , if I had blue hair I would be a dead ringer for Marge Simpson. It was decided by the doctor in consultation with the specialist to put me straight onto 60mg Prednisolone and to see the specialist on the monday morning. What I experienced that weekend will stay with my family and me for the rest of our lives, I thought in all honesty that I was on my way out , more importantly my family thought this also.The specialist said that she thought it may be Autoimmune Hepatitis and that a liver biopsy would confirm this, it was confirmed that I had AIH at the beginning of March five months after symptoms began.
Starting Treatment
To start with I didn’t notice any side effects as I was too ill to care but as time went on and I started to feel better I would experience really bad headaches followed with nausea.By June my face had started to change followed with weight gain and the buffalo hump, as much as I knew the drug was working these changes were dramatic and I felt like I wanted to hide away as people I knew stared when they saw me. I havent been aware that I was vain but the impact of the change in my appearance had a huge impact on my confidence.
When I found out it was AIH, I researched loads of information and decided to cut out gluten and sugar from my diet, and reduced any chemicals going into my system , opted for natural products even made some of my own, I feel my blood results reflected this as the scores came down quickly and I started to taper the prednisolone , the consultant wanted to put me on a second drug Azathioprine but I refused it due to being BRCA2 as it can heighten the risks of some forms of cancer.

By August I felt the strain of the added weight I was carrying , I couldn’t walk very far as it was painful , I became breathless very easily and during the night my partner was concerned that my breathing was impaired whilst sleeping.

Switching to budesonide

So at my last appointment with Consultant I shared with her the extent of my side effects.I was down to 7mg prednisolone and all my results were good, it was decided that we would change drug to budesonide 6mg daily as a maintenance drug. 
It was then I decided to start a diary of the changes. In a month of being on budesonide , I have lost 7lbs,  I have started walking with no pain, I am back swimming. My moon face is disappearing as is the buffalo hump , I know I have a long way to go with getting rid of the weight I have gained but at least I can now do something about it. More importantly I feel a lot happier and my LFT’s, well my ALT is at 28 the lowest it has been since all this began, long may this continue .