Here goes a new beginning...

[CHINGALIS]

Good morning everyone and good afternoon to the land down under (or good evening). :laugh: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!:angry: 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!:smile1:

[Jayne 14]

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


Sent from my iPad using Tapatalk

[annekat]

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. Welcome to the forum, and you will feel much less alone with this disease by being here. I took CTX for I think for about 8 months, which was probably longer than I needed to be or should have been. I felt it worked very well and quickly to clear up my lung involvement, plus I got over the yucky feeling from it after 2 or three months. I was switched to MTX, which took over working on the sinus, ear, and other issues. I'm also still on MTX, a moderate dose of prednisone and 3X weekly Bactrim. Each case is different. I think the stress level in a person's life can interfere with their recovery, so I hope you can find ways to minimize that. Coming here every day can reduce the stress, I have found. I'm sorry you aren't feeling better, but it hasn't been that long and I'm sure you will. It's good your doc is getting you off CTX soon, and I hope AZA will be easier on you. I hope you'll stay in touch and keep us posted.

[CHINGALIS]

I happy to hear that you are hopefully in remission. Aug 10 to Aug 14 is a nice length in remission. I don't know how much Weg GPA has impacted your life. Hopefully not much. I pray not much. I realized this "sick" disease really has torn me up from the floor up. It's really attacked me mentally and physically. I pray daily and I am hopeful that all of this will come to pass. However, I feel as if leukemia has a better chance of cure than this incurable mess of a systemic disease. Sad... I am well and moving forward. I am thankful and blessed form my team of doctors. Managing this disease is a full-time project and I could not imagine the co-pharmaceutical therapies and scheduling of bloodwork, MRIs, CT Scans, etc,.... Thanks for reaching out Dale!

[CHINGALIS]

Anne, thank you for the reply and reaching out. I want to make it a habit to at least bounce of the forum at least once a day. I also have been on Bactrim 3x a week, and 3 weeks ago my doctor added Levaquin. My chest had shown 3 granulomas (all of which are old). Anyhow, it makes you wonder when information like that this is shared, why won't the doctor's comment as to what stage or how long one has Wegner's GPA, as opposed to simply not saying a word. No issue here, just being human. Human with a medical background which sends me off to reading white paper after white paper. Assessing my thoughts and putting together a litany of thoughts about this disease and where I am at with it. Again, trying to keep it real and above all simple. Cheers!

[Debbie C]

Hi Chingalis and like everyone else I am glad you found this forum.You will find a lot of good people here so feel free to ask any questions or just vent whenever you need. There is usually someone on here 24/7 so if the pred has you up all night ! Glad to here you will be coming off the ctx soon ,since it has been shown not good for long term use. I don't know why they are giving you a rtx injection every month on top of the ctx...but I am not a dr. You said you are in the medical field,what do you do ?
I also have involvement in my lungs, I have been in remission for the last 4 years and am currently taking 5mg of pred.
Try not to drive yourself crazy trying to figure this disease out and don't believe all you read on the internet...that will make you crazy. Hope you start to feel less "icky " soon

[Jaha]

Welcome Chingalis,
I am sorry that you had to be dx'd with unpredictable disease. I am however, glad that you found this wonderful group of people, to help you get thru your journey. I wish you all the best to get to feeling better. Take care of yourself.:smile1:

[annekat]

Anne, thank you for the reply and reaching out. I want to make it a habit to at least bounce of the forum at least once a day. I also have been on Bactrim 3x a week, and 3 weeks ago my doctor added Levaquin. My chest had shown 3 granulomas (all of which are old). Anyhow, it makes you wonder when information like that this is shared, why won't the doctor's comment as to what stage or how long one has Wegner's GPA, as opposed to simply not saying a word. No issue here, just being human. Human with a medical background which sends me off to reading white paper after white paper. Assessing my thoughts and putting together a litany of thoughts about this disease and where I am at with it. Again, trying to keep it real and above all simple. Cheers! Chingalis, I'm curious as to why your doctor prescribed you Levaquin. That is a really big-gun antibiotic. Do you have a specific infection? Is it an ongoing prescription? It's hard to imagine it being prescribed like Bactrim, on an ongoing basis. Also, you should read the warnings that come with it about possible tendon damage, joint pain and stiffness, and other issues. I took it a few years ago for an ear infection and had a little trouble that way, but it was minor compared to some stories I read on the internet about delayed reactions. It doesn't affect everyone that way, just something to be aware of.