Meningitis saved the day

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I was born in the UK, and suffered (as did my Father) from undiagnosed FCAS for 3-+ years. Intense pain and rash was just referred to as "my wierd disease".

 

Back in about 2002 I was travelling on business in North Carolina, USA when I developed a migraine... well, I thought that was what it was but it kept gettintg worse.... stiff neck, light sensitivity, shocking head pain

 

Eventually my hotel directed me to urgent care. An exam by the doctor had me immediately in Duke hospital by ambulance where I received a lumbar puncture and was unconcious for three days. Seems pretty grim eh? Was this a previously unexperienced symptom of "my wierd disease"?

 

As it happens this is where luck turned around because I was under the care of an amazing rheumatologist who to this day I can't thank enough. This is because by the time I woke up (BTW it was Aseptic Meningitis) he had taken blood samples, sent them to San Diego (care of the amzing Dr Hoffman) for genetic testing and had the results. Finally I had a name for this thing. FCAS!

 

This one thing meant so much to me. I can't thank hthat rheumatologist and his research associates enough, nor Dr Hoffman.

 

At the time there was no treatment but at least I had a name.

 

18 months later I had another aseptic meningitis attack in the UK - it does seem that this is a possible symptom of FCAS - however that was my last.

 

I tried Anakinra and my daughter (who also has FCAS) guinea pigged it for under 18s and we both tolerated it well but hated the daily shots so my daughter refused them entirely and I spread them out to every 14 days, when I remembered.

 

In October 2015 my new Rheumatologist Dr N Patel in Los Gatos (who is fantastic BTW) reccommended Ilaris. I have now had 2 shots 8 weeks apart. They knocked the whole thing on the head completely, and in fact I am currently 14 weeks since my second shot (whilst I sort out co-pays) and still have very few symptoms.

 

The only 'possible' side effect is my statin suddenly caused a spike in my creatinine kinase readings which it never did before but might be a drug interaction however it is being managed now