Here goes a new beginning...

[CHINGALIS]

Good morning everyone and good afternoon to the land down under (or good evening). I am a new member and have been 100% diagnosed with GPA since 11/25/2014 (diagnosis via a scleral biopsy). Long story short, I came home from Europe last summer due to eye pain, poor breathing (shortness of breath while walking (never mind running), and lastly doubled over with kidney pain. I thought initially this has to be environmental and I should relax. It turned out that it was Wegners GPA. I have to thank Dr. Stephen Anesi of Massachusetts Eye Research and Surgery Institution (MERSI) and the great team at MERSI for their diligence and hard work. I am in the medical field as well and one thing I can tell you is that I make the worst patient! Anyhow, September came and my ophthalmologist sent me to MERSI. After weeks of eye drops and prednisone, the eye and my physical health worsened. Teams of doctor's engaged, Rheumatology, Pulmonology, Nephrology, Primary Care Physician, Hematology, Oncology, you name it. Fast forward to present day, on Rituximab (IV) and Cytoxan (oral) and yes, still on prednisone - but slowly coming off of it. In the past month Cytoxan has helped, but I still feel sick internally. Coming off the Cytoxan in another 3 weeks and moving to Azathioprine. All blood work except for RBC is great. I continue to feel icky. I am Rituximab monthly and I feel great the day of IV therapy up until day 5. Then all goes for not. Fighting this disease and its daemons has been a real challenge. I joined the forum mainly to be helped and be able to help others.

[renidrag]

Welcome Chingalis, I too am from Mass. and see Dr. Monach at BMC. Seems you have things under control and have a good team around you. Have you been on Cytonan since November? It will be good to get off it. Others will be along to share soon, still early. I think we all become terrible patients when our symptoms, as varied as they are, become discounted by Doctors. I did the cytoxan for about nine months from August 09 to June 10, and was in remission until small flare in August 14. Back off all WG meds now.
Dale

[mishb]

Hi from the land down under and welcome.

I'm glad you had a great team of medical specialists to help find a diagnosis and get you back on the road to wellness.

[kaysee]

Welcome Chingalis, You have found a great place in this forum. Hope you start to feel better soon. Sounds like you have good drs who know what to do to treat this nasty disease.

[BookNut]

Welcome!! As others have said - you have found a great place in this forum. It is awesome. You sound to be very "lucky" with your diagnosis. Sounds like you found an awesome medical team. From other stories I have heard, it is rare to have a diagnosis happen so quickly. It is a testament to how well medicine can work if folks work as a team. Hopefully your meds will work well for you and allow you more quality of life and a speedy remission!

[CHINGALIS]

Thanks for the warm welcome. Do you mind me asking what you were on for meds? I have only been on the Cytoxan for the last 45 days will be off of it in the next 3 weeks. I love the team at BMC and unfortunate for me, it affected my eye first and then my body, skin, pulmonary, etc. What meds were you on for the flare-up? One thing for sure, this disease really sucks. Pardon my reaction and choice of words. It is like slow death. August 14 was when I was full blown and not diagnosed.

[CHINGALIS]

Thanks for the welcome. I simply want to feel better. Doctors and team are good. I just wish I could feel better. If the Wegner's won't make feel icky, the Cytoxan and prednisone for sure guarantee that. Look forward to the network of new people and hopefully new friends. Be well and thanks!

[CHINGALIS]

Thank you so much Michelle. Be well!

[drz]

Any kidney or lung damage or anemia so far? Once you start treatment things tend to slowly get better. Wegs is good for teaching us patience.

Best wishes for smooth recovery!

[Jayne 14]

Welcome Chingalis
Hope you do feel better soon , this site is like your best friend / help advice & support on your journey


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