Early Stages GPA Treatment

[Bindy]

Hi,

I am wondering where there is only upper respiratory involvement, what is the most common form of treatment?

Would a Rhumo go straight to Rituxin or try something else first.

Here in Australia I believe Rituxin has just recently gone on the PBS so that means it is for free to anyone that needs it.

Also are Steroids used at the same time? I have also read Benadryl may be used?

Apologies for my naivety, I am so new to all of this.

Kindest

X


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[mishb]

Upper respiratory for me, (sinus, ears, eyes and throat) including joint and muscle pain.
I have never had rituxin, just methotrexate and prednisolone (steroid) and plaquenil (hydroxychloroquine)

I don't believe that we can get Benadryl in tablet form in Oz, like in other Countries.
Our Benadryl is only a cough mixture, however it is my go to brand.

I hope, whatever the treatment plan, it works well for mum, so that she can keep back to feeling near normal again.

Take care, and .....

[Pete]

@Bindy

The short answer to your question is, “It depends.” We are typically dealing with drugs that have one of two functions. (1) Suppress an overactive immune system and (2) reduce inflammation. Rituximab, methotrexate, azathioprine are used to suppress the immune system. Prednisone is an anti-inflammatory. Mum’s doc may also prescribe an antibiotic such as bactrim as prophylaxis against PCP pneumonia, to which we weggies are more susceptible.

Several factors may be used to determine dosage including severity of symptoms, the patient’s weight, or some other standard. Also, the treatment protocols continue to evolve with new drugs being added, and less effective or more dangerous drugs being used less.

You’ll want to ask about side effects (nature, severity, probability) and what to do if they occur. It helps to understand that side effects for a drug are sometimes listed for legal product liability concerns.

Hope this helps. Remember that everyone on this forum has been where you and your Mum are now. There aren’t any stupid questions.

[Bindy]

Thank you!


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[alan1107]

Upper respiratory only for me (cough, sinus, wheezing and shortness of breath. Diagnosed in November 2022, started Rituxan infusions in December with high dose steroid (Prednisone). No relief from symptoms by end of March, CT of lungs showed I had worse GPA than in November. Considered it a rare Rituxan fail and I had my first infusion of Cytoxan in April. Hope this works.

[Bindy]

Sorry to hear Rituxan failed, wishing you best of luck for your new treatment!


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[J@$0N]

How many Rituxan treatments did you have?

[alan1107]

Hey Jason,

I had two. December 13th and 28th. With no relief in my symptoms by April, they did another CT and the pulmonologist said my lungs looked 10 times worse than they were in November and had some collapsing in my right lung.. They they did another Bronc and found the my right lung had membrane covering over the lobe to my right lung. The had to dilate it three times to get the 3mm scope into the lung. Started Cytoxan End of April with my next infusion May 30th.

[J@$0N]

Sorry to hear the RT didn't work. Mine presented in my aorta and I was given 1000mg of RT once a week for 4 weeks and again every 6 months after until my ANCA wasn't showing. Like others have said, it takes on so many forms everyone. I hope you get relief soon.