I think! I found a forum..it’s American, she’s Australian 😂 I have never found anyone else with IgG4 RD in 20 years! It’s so rare there are hardly any of us...possibly a few people in Japan...that’s where my consultant back in 2000 went for me to find out more about it.
Anyhow, some of her medics think she does have it& some don’t know as there’s little known about it...maybe less in Oz.
But it felt good to chat with someone else who is a unicorn 🦄 of similarity!
It’s a strange thing having such an unknown and rare disease.
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madonbrew
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That's great 😊 I know even with common symptoms or conditions it's reassuring when I find someone here who's experiencing the same thing. It must be very odd indeed being such a rare unicorn 🦄 I'm glad you found someone you can share your thoughts with.
It really is a blessing to find her! And that it’s affected similar organs....not that I want anyone else to be sick obviously, but it affects different organs in different people.
Thank you Ergengi, yes, just knowing someone else out there in the world had the same thing doesn’t make it feel quite so lonely! I know there are a few of us worldwide...maybe a handful here in U.K. , but it’s finding them!🙃
a great find for you madonbrew- enjoy chatting As I’m totally ignorant regarding your condition , what are your issues as I like finding out about things new to me. XAnita
Might be a long reply but I’ll explain as best I can....
I got sick aged 19& my liver function tests were really bad. Lots of dihorrea& weight loss. Following loads of tests & a liver biopsy they said my liver looked fine but wasn’t functioning well. Ended up in hospital as an emergency with pancreatitis & they couldn’t figure out why I had it...not an old man, not alcoholic, no gall stones. My bile ducts were blocked & my gallbladder had been chronically inflamed but not functioning. They put stents in bile ducts but made no difference...removed them following year.
They eventually took out gallbladder & put me on steroids. I became a medical mystery. My consultant at the time...2000ish flew to Japan for me to a medical conference where they came up with the diagnostic criteria for autoimmune chronic pancreatitis. Think this is when they also figured the IgG4 thing. Basically at that time there were only 100 cases worldwide & the international conference was based on just 15 of us.
Fast forward a few years and my kidney function dropped from 84-38% within 4 years. My nephrologist found one piece of research that linked kidney disease with autoimmune pancreatitis under the umbrella of IgG4 systemic disease (aka IgG4 Related Disease)
Basically IgG4 (A subclass immunoglobulin)was firstly related to autoimmune pancreatitis & was found to respond to steroids. They are gradually finding that it seems to attack more than one organ . Basically it’s like my own immune system attacking itself.
Unfortunately for me , I can’t take steroids long term as they give me suicidal depression(now on my notes not to be given long term) so I am treated with a biologic drug called Rituximab...it’s expensive! by infusion& I think rheumatoid arthritis is sometimes treated with it& a few other things.
Now, I am 42...soon! My pancreas is duff& I’m insulin dependent diabetic. The Rituximab is seeming to keep my kidneys basically in between 33-38%function.
Lol...with all of that I’m on this forum because of severe asthma...which is actually the most troublesome issue at present! I wouldn’t be surprised if it too is an IgG4 thing.
They do a blood test to measure the levels and I have Rituximab as and when they are going too high& on the attack again!
Oh gosh what a lot to deal with and asthma too. Thanks for that information. Enjoy your chatting with a fellow sufferer. Amazing how we communicate across the miles in a few seconds. Xx
That’s great. It helps so much to speak to someone else with your complaint. I felt relieved to speak to other people with my complaint when I came on here. The power of the internet is fantastic.
I am on social media I mainly use it for interests, that sort of thing. I do like twitter as well because I can choose what I look at. I never tweet or post much anyway. I had the internet when it first came out there wasn’t much on there but I could see the possibilities.
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the end.... how should we deal with our own and others feelings?
Tired and drained
Bronchiectasis with Pseudamonas in the past 
