Here goes a new beginning...

[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.

[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.