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I've been going down 1mg a month since I got down to 10mg. I'm torn because getting down to 5 mg is a big priority for me but I don't want to risk causing a flare up or anything.

I really...

I'm very interested in this as well... if things go well my doctor has said he would agree with us trying as soon as June! Any advice is greatly appreciated! <3

I have been on 20+ mg - including several months at 60 - for the past two years. I have FINALLY weaned down to 10 and in that month I lost 5 lbs! I'm still on strict orders not to do anything aerobic...

Hey all!

I have been having a really difficult time at 9mg of prednisone. I was GREAT at 10mg! So many of the side effects went away, my energy went up, I even lost 5 lbs because I could finally...

My rheumatologist started me with RTX when I was diagnosed 2 years ago. According to what he told me and the research data he gave my honey (who has a medical background) it is actually supposed to...

I too have struggled to lower my prednisone.

For two years I have not been able to get under 15 mg... most of that was actually spent at 20 mg. When we have attempted to lower the prednisone we...

Thank you guys!!! I have my appointment with my doctor on Thursday. He said we could have an in depth conversation about it.

Hey all!

So, I am 33... was and still am completely healthy outside of the Wegener's. In January I will be a year post Rituximab. Currently I am on 150mg of Imuran and 15mg of prednisone per day....

Cytoxan is very likely to cause infertility after the very first dose. If we have to go that way we're thinking of harvesting my eggs and going the invetro route. In which case cytoxan may actually...

I am on Imuran and prednisone and have not been told to not drink... but I have found I want it less. Even an amazing glass of red wine - which I love. I turn drinks down all the time. We did a big...

Thanks guys!

My doctor has cytoxan as a last resort. We're hoping to preserve my fertility. I'm lucky enough that all major/life threatening stuff is suppressed by the prednisone currently. So...

Hey everyone!

I was diagnosed in Nov of 2012. We started Rituximab infusions 3 weeks later and I was on 60 mg of prednisone a day. That was the first round. When it was clear in April that it had...

I have received 3 infusions of Rituximab and all of them were taken care of via Genentech. I believe as long as your household makes less than $100,000/yr you are eligible for it for free. It was...

Carrie! Thank you for sharing! I love reading about everyone's paths... I am new here. My diagnosis came almost 2 years ago but I have only recently started reaching out to others going through this...

Hi Megan!

I was diagnosed in Nov of 2012. I had always been incredibly healthy until I started coughing up blood, got insanely tired and it all culminated in bi-lateral edema that put me in a...

My nutritionist just added this to my supplements a few months ago. I haven't noticed any particular difference. I do know it is supposed to help with inflammation - but sometimes I wonder if it...

I have terrible night sweats... but yes, I can definitely have sweats any time. Right now I would guess it is more my prednisone but it is also a sign of a flare up for me... overheating is my #1...