View Full Version : Remission?

09-01-2009, 05:20 AM
Can someone help me explain how to know when WG's patient is in remission? My son,Josh, was diagnosed in April. He's had a few rounds of chemo and continues to take CellCept and Prednisone. He'll need transplant at some point in future. Creatine on Thursday was 5.5.

09-01-2009, 06:07 AM
There is no timeline for remission that fits all people. Some weggies, in fact, never achieve remission.

If "remission" is "absence of any medically-defined state of disease activity", then learn all you can from your son's doctor, this forum, reliable internet resources about active WG test levels so you'll recognize the point where your son is in remission. Maybe!

I had to go 1-1/4 years before my doctor called remission for me. Some of my measureables were a little elevated if marginally "normal", so he was hesitant to call it until a few months and tests results later it became apparent what was "normal" for me were these slightly elevated readings. I had, in fact, started to feel great earlier than the official start of my remission.

There is a bit of science and a bit of art involved in calling remission. It hasn't been that long since your son started treatment. Kids come back faster than adults, but you need to consider the seriousness of his kidney issues.

I think most of us have started to use the "no symptoms of active WG" method of calling our remissions. If we feel good, don't have symptoms, then we may as well be in remission! It may be that we still are on medications, and mostly likely are, but that's a small point if you feel good again.

Incidentally, welcome to the forum! If you haven't checked out this website, please do:

Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

09-01-2009, 01:02 PM
It is just like Doug said. I was diagnosed in November of 2006. After 2 chemo rounds, I am now on both cyclophosphamide and methotrexate. Although I generaly feel OK, my blood test show cANCA going up and liver not normal with very low lymphocytes. So feeling fine but according to blood work not doing that great. Personally I just go with how I feel and make sure I follow my doctors advice.
I am sorry your son has been diagnosed with this miserable disease. Although it is a BFF for life I hope that due to his age he will quickly recover and stay in the in between land for a long long time.

09-01-2009, 01:37 PM
I don't know the numbers, but it seems a fair amount of people wind up being in "drug-maintained" remission-- meaning they do pretty well as long as they stay on one or more of the drugs. We're all shooting for drug-free remission, but it may not be possible for everyone. I hope your son can get to it very, very soon.

Martin Thomas
09-01-2009, 07:34 PM
My consultant (the eminent Dr David Jayne at Addenbrooke's Hospital, Cambridge, UK) has explained how difficult it is to say when a patient is in remission, primarily due to the disease having no reliable biolgical markers. Anomolies in my case mean that whilst my vasculitis is in general remission there has also been localise areas of apparent active disease with CRP and C-ANCA PR3 markers well below the norm.

A common term used in the recovery process is to say the diease is 'quiet' meaning there are no signs of the disease being active. As has been suggested, this may be a drug-maintained or natural process.

In my case I am absolutely fit and healthy on paper but am still experiencing ENT, neurological and respiratory problems, all of which may be damage rather than WG activity but without tissue biopsies (still not 100% conclusive) it's impossible to say whether I am disease free.

Sorry if this doesn't sound very positive but perhaps it's better to measure how well your son actually is rather than assumed from a label?

09-01-2009, 09:13 PM
Thank you so much all for your information. I'm still not very educated on this disease as it seems a bit confusing, but I do know that Josh had ANCA antibodies present in April and last bloodwork to test for ANCA's came back negative. I took Josh to Dr. Peter Merkel at Boston Medical Center a few weeks ago. If you all don't have a good WG doctor, I would recommend seeing him. He's treated hundreds of WG patients and is actively doing research on WG. We go back in November to see him. He told Josh's current Dr that's treating him for WG that Josh did not need any more IV chemo. He told us that he "thought" that Josh was in remission but needed to review his records more. Josh will need a kidney transplant but Dr. Merkel said that Josh needs to be in remission for 6-12 months before he can receive a new kidney.

09-02-2009, 12:07 AM
I'm so relieved that you have a Wegs specialist. If you've read old posts, you may have noticed it's my favorite nag, for the very reason(s) you described. ;)

I'm sure Dr Merkel has explained how the ANCA research shows it to be a very unreliable marker of disease progression or treatment efficacy in most people. For a few people, the ANCA correlates very well with those things. I hope your son is one of them and that his (-) ANCA proves to be a sign of remission coming. :)

My ANCA was very high at dx and has gone through the roof for the 3 yrs since, even though I was in better and better shape. My Mayo (Arizona) doc-- not a Wegs specialist, but a Wegs-frequent flyer-- was always terrified to see it. You should have seen my JHU Wegs doc's face when I told him. He does a lot of the ANCA research and has found it to be a fairly useless test (his words) for most people. He doesn't even check mine.

With cancer treatment, you wait for the big day where the doc looks at the latest test results and says, "No evidence of disease." Not the case with Wegs. Often, remission is only evident in retrospect. Flares, too-- which is my case right now.

09-02-2009, 02:24 AM
(...and we all agree our friend Sangye can be a real nag! Listen to her, though, as she has much, much more WG history than many of us, plus she's a chiropractor with a good sense for the efficacy of alternative medicines.):)

Oh! I didn't think you'd read the parenthetical note, Sangye! Oops!:p

09-02-2009, 05:41 AM
Actually, I'm sitting at JHU in the Vasculitis Center reading this on their computer. I'm laughing at loud, and I bet the other patients sitting here think I'm just nuts.