Hi everyone, thank you for having me, I'm learning so much from reading your stories and experiences and finding comfort here.

I am so sorry that you or a loved one have been affected by this disease but I am so, so thankful that there is now treatment unlike for my aunty a long time ago.

30 years ago my mums sister passed away from a very rare autoimmune disease. They thought she has Wegeners initially and started treating her for it, but back they didn't really know how to really treat it. They gave her Chemotherapy and Radiation in her sinuses.
They ended up finally diagnosing her with Lethal Midliners Granduloma aka Polymorphic Riticulosis. Which I believe even back then was alot worse that GPA.

Mum first symptoms was an ear infection after her 3rd vax Pfizer not sure if that triggered, didn't have any other problems until 12 months later her neighbour chopped a tree down in backyard and mum has had constant sinus and terrible headaches for 3 months.

9 courses of antibiotics did not clear up and her headaches were debilitating. She recently had joint pain in feet, knees and elbows and could barely walk also swollen ankles, hopefully not kidney involvement.

She was sent to an emergency ENT appointment who after hearing of the family history of her sister requested mum to have a biopsy ASAP. The results of the biopsy and bloods came back and they have confirmed GPA. Thankfully I think she is in early stages thanks to the early diagnosis from the ENT.

The same week mum was diagnosed with GPA my father has been in hospital ICU with Sepsis after starting Chemo for relapsing Lymphoma, he has since had 4 operations on an infected leg and now has had his leg amputated. This worried me as I know stress can be a trigger for mum.

Mum has now been referred to a Rheumatologist who is meant to be the best in our area. We live an hour south of Sydney. He is only 43 and I am a little concerned that he does not have much experience in this disease yet I feel like I can trust him.

He has requested lots of blood tests and kidney tests and did a CT on lungs. He has put her on 60mg Prednisone for now and she is almost pain free.

We have an appointment with him again in a week and he will let us know what treatment plan mum will go on.

He mentioned something about Methotrexate or Rituxamab. I am wondering how do I know if what he puts mum on is the best treatment for her?

Apparently Rituxamab is now recently on the medical PBS which means it's for free in Australia now whereas you used to need to pay for it yourself.

I asked him is she was to go on Rituximab straight away would that be a bad thing as I am worried it will have less effectiveness later on down the track if she has a flare or long term side effects, he said that I should not be concerned about that.

Will they only start Rituximab if her lungs and or kidneys are involved and Methotrexate and Prednisone if still only in the upper respiratory stages?

If anyone can give me any advice of what you think the treatment plan will be for Mum. Or if you can give any other advice on what we can do being in hopefully early stages knowing what you know now. That would be much appreciated.

Thank you!!

Bindy

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