One year in, greetings from Australia

Hi everybody! Let’s just jump straight to the beginning.

Late august 2019 (just before our Spring) I started getting a large rash from the neck down all over my torso and upper limbs. I initially thought it was some sort of allergic reaction to some plants I’d been cutting back. A week later it was worse, so my GP referred me to a dermatologist, who performed a punch biopsy and found a possible allergic reaction. Treatment was over the counter antihistamines, which actually pushed the rash back.

About three days later I notice stiffness and pain in some joints (left shoulder, left elbow, neck, both knees, left ankle). The pain got progressively worse until I could barely move some days. I went back to my GP and we went through some possibilities, including maybe Ross River fever or some form of STD. She eventually referred me to a rheumatologist near my residence who performed some blood tests and physical exams. The day after the blood test he was rushing me into hospital to do further tests for something called “ANCA-associated Vasculitis.” I laughed and said I’d never heard of that, his response was basically “It’s a good thing I have, because hardly anybody else knows of it.” As you probably all know on this forum, the Anti-neutrophil test is not something which is regularly preformed, and doesn’t come up in a standard blood work.

anyway, I spent a couple of weeks in hospital, I was shoved straight on to 50mg of Panafcort daily, which screwed my blood sugar to hell, so they also plugged me on to diabetes medication to control that. Meanwhile I had kidney and lung biopsies, contrast CT scans. My left eye became inflamed and itchy to the point I could barely keep it open. A couple of times I felt like I could barely move and my appetite dropped off to zero. I’ve been hospitalised a few times, but this was pretty confusing and overwhelming because I’d never heard of GPA.

Biopsies all came back clear, they had been especially worried about my kidneys, but they were clear as well. I was release back to home, had a med plan worked out, and booked for Rituximab infusions in the following weeks.

A year later, four specialists, multiple clinic visits, my granuloma numbers have gone from 600 to 10.7. I have another follow-up next week with my rheumatologist. I’m moving fairly freely now, no rash, no other complications so far. Fingers crossed, but I’m hoping it’s in remission for now. The worst part is being on 2000mg mycophenolate daily and then having a f***ing COVID pandemic hit three months later. I’m sure you can all relate there.

Thanks for indulging my sob story, I’ll keep updates coming. Stay safe everyone and thanks.

Hey Peter
Welcome and thanks for sharing your story. Where abouts in Australia are you? I'm in Canberra. Yeah it's a confusing time during that initial 'discovery' phase where you could be afflicted with just about anything. It's awesome you got early treatment too, that would have helped a lot too. No kidney involvement is brilliant :thumbup: Looks like you're doing good though. Next step is getting off the mycophenolate. Might take a while though. Are you still on Prednisolone?

Welcome again. Glad to have another Aussie on here!

Cheers
Andrew

Hi Andrew,

Thanks for the reply, I’m in Southport in the Gold Coast. ATM I’m down to 5mg Panafcort daily, my blood sugar is fairly good atm, and I was really lucky to get a top rheumatologist and endocrinologist. I’m still on 2000mg mycophenolate for the next eight or ten months. Haven’t had anything more than occasional joint pain and fatigue for six months now, so hopefully when I kick it into submission it won’t come back for a while. But I do realise I’ll have to keep constant vigilance for the rest of my life, one of the reasons I tracked down a support forum for future reference.
I’m not going to “fight” GPA, I’m intending to track it through the jungle in the darkest night until it’s cornered in a pit trap. Then I’ll kneel on it’s throat until it breathes it’s last and I inhale it’s life essence for my own.

My GP keeps telling me she’s never had a GPA patient before, I keep telling her when she wins the Nobel prize, I get half the cash.

hows your journey going? It sounds like you’ve been going for quite a few years now. Are you in remission or still getting flare ups?

Welcome to our elite group. Sorry you had to qualify for admission, but I'm very impressed with the good medical care that you got in a quick diagnosis and getting appropriate treatment. You are very fortunate to have it diagnosed and treated before you incurred a lot of body damage like many of us experience.

As you may know GPA is never cured but it can go into a long-term remission and you appear likely to be a good candidate for that happening to you. I would maintain close contact with the excellent healthcare team that you lucked into and follow their advice and recommendations. You probably have a very good prognosis for maintaining good health.

Quote:

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Originally Posted by Peter Marsham

I’m not going to “fight” GPA, I’m intending to track it through the jungle in the darkest night until it’s cornered in a pit trap. Then I’ll kneel on it’s throat until it breathes it’s last and I inhale it’s life essence for my own.

hows your journey going? It sounds like you’ve been going for quite a few years now. Are you in remission or still getting flare ups?

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Hahaha yeah track it down and kill it slow - that's the way to do it :)

I'm going ok. Been a bit over 17 years since diagnosis. Even though I'm in dug-free remission I have ongoing niggles from the effects of the disease. Nothing that will kill me though and apart from that I live a normal life.

drz, I can say the specialists I have are brilliant, and I seriously wouldn’t have made it this far without them. And let’s face it, as far as life-threatening incurable conditions go, I think I got off pretty lucky, having it diagnosed so quickly. I’ve still eight or ten months on the mycophenolate, so we’ll see how I go after it starts to taper down. The secret will always be vigilance, just keeping the GPA in check, and getting on with everything else.

thanks for the post, talk later.

That sounds like you’re living the dream. I don’t think I have to remind you to do your blood tests and stay with your doctors, etc. in the end, it’s just a thing, like any other thing.

Hi Peter and welcome to the club that no one wanted to be a member of, but glad that we found it.

Another Aussie.
Thankfully, for me, this means that our doctors are on the ball and becoming more aware of this condition, and diagnosing earlier. This is a good thing :thumbup:
I'm a first for my GP too, and sadly it took her quite a while to believe that I needed to see a specialist ENT for my sinus issues.
Thank goodness she came around.

It sounds like you have things under control, and I love your can do attitude. Please get that wegs dog for all of us. We would be forever grateful.

If you are on facebook, we have a vasculitis group for members from Australia and New Zealand, which you are most welcome to join.
We have many members from the Gold Coast, so who knows, you have probably passed each other, in the specialists rooms.

Keep well, and

Hi Michelle, and never fear, soon as I kill it, I’ll drag the body out while wearing my suspicious safari suit and pose for the hero shots. Unfortunately I don’t have a FaceTube on my inter web, never really had the desire for it tbh, but I’ll be checking in here regularly. Who knows, we may be able to do a get-together where everyone stays two metres apart and wears masks. Fun times.

later dudes,

Pete.