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Does anyone have any information about Vasculitis GPA?
I have been through a year of torment with pneumonia’s and lung infections and finally lost my left upper lobe. I probably was hospitalized 13 times during that year and was so sick. I could barely get from my chair to the bed until after they took the lung out. I am doing better now, but recently they’ve diagnosed me with vasculitis GPA. I’ve been on a strong dose of steroids, depress my immune system and they’re going to try me on an auto immune infusion monthly. Has anyone else had this and you have any insights.
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I have A disease called EGPA which has an eosinophilia component but was also on steroids before starting a biologic called Nucala. For me it has worked well. Three shots each month and my symptoms receded. I was able to slowly back off of prednisone by following suggestions from the Mayo site. Slowly, especially as you get under 10 mg is essential to success. It has been two years of shots and I probably may always need them, but worth it to get back to living.
Good luck with your treatment and stay connected to Mayo for the help of good people who have been in your place and are doing well.
MTH13.
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1 ReactionI have had GPA since 2018. Like most diagnosis followed at least a year of crazy sicknesses. The protocol drugs after Prednisone are Rituxan and Tavneos. The sooner you are on them the better. They can get your disease to inactive... not doing more damage. Unfortunately for all of us, we've had significant damage by diagnosis. Sorry for your losses.
If you don't have one... find a Rheumatologist who knows GPA. The Vasculitis Foundation keeps a national list of docs. Blessings on your journey. Life will be different, but can still be wonderful.
Kathleen
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2 Reactions@mth13 Thank you so much. I have gone down slowly from60 mg for about three months tapered now to12.5 mg. I can’t wait to get off them, but I feel very, very blessed to be feeling better able to do some work in my house and go to town and not be exhausted. I’m glad to hear you’re doing so well hopefully I’ll have the same response.
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1 Reaction@purehope2022
Thank you so much, Kathleen. It was very helpful. I never even heard of this disease for all of my problems. I appreciate all the information you can give me. I am at MUSC in Charleston working with the Rheumatology department there and the pulmonology NCT clinic he seemed to be doing pretty good, but it took a long time to convince Rheumatology. This was vascular GPA. As soon as I started on the steroids though and started turning around and getting better.
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1 ReactionIf you're not familiar with the Vasculitis Foundation, they have a lot of useful information about vasculitis and the different subtypes, including GPA and EGPA. Their associated research division, the VPPRN, is a leading research center for vasculitis. if you are interested, you can register for the VPPRN and participate in research of your disease and general vasculitis. A lot of their research is done with online surveys, so participants can live anywhere in the world. Here is a link to the Vasculitis Foundation GPA information: https://vasculitisfoundation.org/education/vasculitis-types/granulomatosis-with-polyangiitis/.
I joined the Vasculitis Foundation and VPPRN about a year ago after being diagnosed with Giant Cell Arteritis and Polymyalgia Rheumatica. They support both of those diseases.
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2 Reactions@cartersgirl2
I have found my docs at Mayo respond well to the question " what is protocol""?" It lets them know they should not be 'making up ' your treatment plan as they go. Even though we are all different, it's safer to start with standard protocol drugs that have worked. They can be tweaked later if our bodies do not like them. You are your best and sometimes only advocate for excellent care. Be brave! 🙏🏼
@jeff97 thank you. I was looking to see where to join I don’t see a specific spot on the site but I may be overlooking it can you help me?
@purehope2022 Thank you! You are the best. I never even heard of this until it slapped me down. Now I am just trying to figure out next steps. I go for another CT scan March 9 th I believe to see if the steroids are working however I am able to get up now and clean my house a little and take a trip to town without feeling exhausted so I feel like they are working.
@cartersgirl2
You can join the VPPRN at this link - https://www.vpprn.org/webapp/Views/Join. Once you join, you will be notified about any research projects that you qualify for you. Also, they have online presentations sometimes about new treatments, research, and other information about vascular diseases. You will be notified about those presentations.
@cartersgirl2
Be careful as you get below 10mg. Remember percentages. 5 mg is fifty percent of 10!!! You could try 7-1/2 first for a few days, then 5. then go slowly down to get off. There are good charts on this site for safe prednisone tapers for those on it a long time which helped me. I was on it 9 months. Had to backtrack to 20 once because I went too fast.
You will do it! Believe that!
🤗MTH13