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I hope you can continue to gain back strength in your legs John. Will be thinking of you.

Kathy

Thanks Pete. Your posts always lift my spirits. Peripheral neuropathy is the next symptom I will tackle by hopefully seeing yet another specialist. I was hoping that would get better too but it has...

Thanks for sharing this John. A year ago I was very weak from this disease. I was on 60 mg. prednisone and had my 1st Retux infusion on 4-20-2023. My muscle, as well as joint, strength continued to...

Wow is right. That is one scary story. Glad you are feeling better.

Kathy

Rest In Peace Patti.

Kathy

I did not know Lisa, but I read back today and see that she really put up a good fight against this disease for many decades. I learned a lot from reading many of your posts dear Lisa. Rest in Peace....

I have this as well. It is just my own voice and sounds from within my own body, that become amplified. Talking on the phone is brutal. I can even hear my eye lids open and close. An ENT diagnosed...

I am sorry for your loss Alysia. May Phil Rest In Peace.

Hi Cara J,

This disease is a lot to digest. On top of you already being sick and on chemo. What helped me the most was diving in and finding out as much as I could about the disease. Of course...

Sorry to hear that you are going through this Chadwyck, but it does sound like you have some good Docs. Hope you can get good results from the Rituximab. Be well.

Kathy

Hi Pete,

I am not surprised you could not sleep. They usually administer 100 mg of solu medrol. That amount of steroid alone will prevent me from being able to sleep for a few days. I am anxiously...

Ben,

Thank you so much for sharing all that. I had many of the same symptoms in the same time frame and was also misdiagnosed with pneumonia. It took longer to get diagnosed which didn't happen...

Wow. That is a great story Chadwyck. I will soon have a second round of Rituximab infusions. I thought I had some initial improvement but right now my symptoms are as bad as they have ever been. I am...

Just an update. My new Doc at MGH that specializes in GPA believes that I have had it all along and that possibly what was previously diagnosed as Giant Cell Arteritis was incorrect. He claims he...

Thanks for sharing all that. I get frustrated, and scared, when I encounter a lack of understanding the seriousness of this disease. My own account of what my body is experiencing is often ignored....

Thank you Amy for sharing your story. I am also from the Boston area and, after 2.5 years was finally diagnosed with GPA at BWH. I am now seeing a Dr. at the MGH Vasculitis Center. I had my first...

Thanks for the support Pete. I am waiting to hear back from Doc. I am experiencing pain in my chest and back that is nearly intolerable. I have always had a very high threshold for pain but this is...

Thanks Pete. That has been my advice to the Docs. Back 12 years ago when I was being treated for GCA my doc at MIT slowed me down to reducing prednisone by 1 mg. per month. Yesterday I claimed few...

My new Doc at MGH/Boston started me on Avacopan about 6 weeks ago. His emphasis was that it would help me to get off Prednisone. I was having difficulty reducing at a very rapid rate (20mgs. in 2...

Years ago I was treated for GCA (Giant Cell Arteritis), a vasculitis of the temporal artery. I had a horrible symptom where my scalp felt like it was on fire. It was so sensitive. Washing it,...

Thanks so much Pete for your advice. I knew I was likely over reacting, out of fear mostly. I believe I did peek at the Vasculitis Foundation website awhile ago but that was before recent events. I...

On April 6, 2023 a lung biopsy result officially diagnosed me with GPA. It took nearly 2 years. I have a history (beginning 2010) of being treated for Giant Cell Arteritis, a vasculitis of the...

On April 6, 2023 a lung biopsy result officially diagnosed me with GPA. It took nearly 2 years. I have a history (beginning 2010) of being treated for Giant Cell Arteritis, a vasculitis of the...