My story

Following Ivonnepf's message to me I shall tell you all my story:

I had been suffering a lot of stress at work and woke up one night with my heart pounding. My GP referred me to a cardiologist, who subsequently diagnosed paroxysmal atrial fibrillation (AF) and prescribed flecainide, which controlled the condition for a couple of years. More stress at work provoked another severe attack and I was blue-lighted in to resus at the local hospital one night and admitted. I was told my liver readings were abnormal and that this indicated a type of hepatitis which was not diet/drug related. They were interested in whether I had been travelling and what I had been eating. Over the next few weeks my liver readings returned to normal, so they though it had been a transient virus. The cardiologist decided to do an ablation to correct the arrhythmia.

Unfortunately, complications in the ablation resulted in cardiac tamponnade and a cardio-thoracic surgeon had to be called in as an emergency to perform open heart surgery to repair the injury to my heart. I survived, but was off work for 6 months.

I returned to work but felt terrible. Over the next 6 months I had muscular pains in various parts of my body, suffered extreme fatigue and felt stressed all the time. I kept going to the doctor saying there was something wrong with me, but they didn't do any blood tests so didn't find out what it was. The pain in my chest was put down to the sternotomy, no-one suggested costochondritis (which apparently is what is was, I keep getting it). Then I went bright yellow and was admitted to hospital with AST/ALT readings in the thousands.

Without any evidence to support their diagnosis, the A and E people wrote "ETOH" on my notes (I subsequently learnt this means alcoholism), and told me my jaundice was caused by alcohol consumption (it wasn't). I saw the consultant two days later, who told me I had antinuclear antibodies, anti smooth muscle antibodies and markedly raised IgG, among other things, sent me for a scan, and did more blood tests. Verdict: suspected autoimmune hepatitis. This was confirmed by a liver biopsy. I had an unreserved apology for the "ETOH" on my notes.

I was put on a very high dose of prednisolone, which was then tailed off and replaced by azathioprine. My liver readings returned to near normal but my white cell count plummeted. A registrar at the hospital reduced the azathioprine dose from 150 to 50 and my liver readings shot up. The consultant swapped me to 100mg of 6-mercaptopurine and everything normalised again.

Then I developed a rash on my face, which became progressively worse. My joints ached and my hair started falling out dramatically. My mouth was permanently dry and sometimes I felt I was choking. My gastroenterologist suspected a connective tissue disorder and referred me to a rheumatologist who diagnosed Lupus with possible Sjogren's although I don't have the right antibodies for the latter. He put me on 400mg hydroxychloroquine, which took a while to work but cured almost all the symptoms. It is a wonder drug.

I have a referral to the Lupus clinic for my skin later this month, but in the meantime my local dermatologist has been treating my facial rash with steroid creams and pimecrolimus, which are working well. I still have the characteristic malar rash (SLE).

At my last gastro appointment my liver readings were completely normal. My white blood count is rather low and being monitored but is currently nothing to worry about.

I am living proof that you can survive cardiac tamponnade and that AIH is a manageable disorder. For the time being I continue to work full time.

So that's my story. I'd love to hear about other people's experiences of diagnosis and treatment as I know no-one else who has the condition and feel very much on my own.

Thank you for reading and apologies this was so long.

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  • Please see the post from the new member which also can be of benefit to all.