Mum recently diagnosed with GPA This is my first post and I would love some advice!

[Bindy]

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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[Pete]

Bindy

Sorry to learn your Mum has joined our club. I hope she gets effective treatment soon.

There are several effective treatments for GPA. Treating the disease is a bit of an art coupled with much science. Methotrexate, rituximab, and prednisone are all useful. At one time, I was on all three at once. I don’t know the criteria doctors use when developing a treatment plan. Ask questions until you’re satisfied with the rationale.

I was able to discontinue methotrexate after being on it for a couple years. I got off it because of excessive fatigue for several days following my weekly dose. It took me over three years to wean off prednisone (got off it five years ago). I’ve been on rituximab since 2014 with no issues.

I’ve been in remission for about ten years. I lead a normal life for a 76 year-old. I hope your Mum gets similar results.

[Masha]

Bindy, sounds like you have a lot to deal with at one time. Your 43 year old rheumatologist may be better trained to deal with autoimmune than others were years ago. It is now on the forefront of issues and medical schools are not just emphasizing training for arthritis.
I started with methotrexate, folic acid and prednisone. The folic acid gave me horrible diarrhea, so I was switched to Rituxin and prednisone. Currently get Rituxin 2 x a year and have weaned prednisone to 3 1/2 mg.
As you have learned there is no cure for this disease but unlike your aunt’s day there is treatment. I am a 73 year old female.
We have learned stress is a trigger, so I have no answer to your mother’s concern about your father. It is a normal reaction. Perhaps you can appeal for her need to get better so she can be strong for him.
You are a wonderful daughter. Prayers to all of you.

[drz]

You are lucky she got an early diagnosis before there is a lot of body damage. Today there are a lot more treatments available. The doctor will use whatever treatments they think are most appropriate given their assessment of the patient. Today it is easy to get a consult with other experts any where in the world and the Vasculitis website used to offer that service free. Google it.

Any GOOD doctor will take time to explain their assessment and recommendations for treatment. So ask them. There are more than one treatment option so why does he or she recommend their approach. Does he or she consult with any other experts? How many cases have they treated.

All meds have side effects and sometimes they can be serious or deadly but fortunately this is usually rare. And it helps to remember that untreated GPA is generally fatal in a short amount of time so the low risk of some bad side effect is a very good choice for any treatment.

Early treatment usually has a good prognosis so best wishes for s good outcome.

[Bindy]

Thank you so much, I will be asking lots of questions at her appointment next week.


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[mishb]

Hi Bindy. Welcome to the club that no one really wants to enter. I glad you found us.

I also had a very old rheumatologist in Melbourne (who has now retired), and I have found a young 30 something rheumatologist who is very clued on.
Masha is correct in seeing that the younger ones are probably more up to date with the treatments, and also the disease. I believe they now learn about Vasculitis during med school and rotations, where years ago, it was just a single page in their lessons.

Give this bloke a good go. Hopefully mum will get some answers and will be on her way to getting her treatments sorted.

I'm so sorry to hear about your dad. That has to be weighing on everyone's mind and I'm positive the stress is not helping your mum, at all.

We have a fb group for Australians and there are many members from Sydney and surrounding areas, so it won't be unfamiliar territory for this rheumatologist, I'm sure.

Best of luck to your mum, and sending hugs and prayers to your dad, and also to you. Stress can take it's toll on everyone.

And remember ........