Many of us are Heading toward remission

[elephant]

Got this idea from Sangye, because many of us are heading toward remission, it's sometimes not so smooth. So I feel that I am not in remission just walking toward the light ( remission).
Today I feel ok, but still a lttle stuffy. Just a tinge of blood when a blew my nose, but that can be from our dry house and the Veramyst spary. So I decided if this stuffiness does not go away in a week, I will be calling my Rheumatologist and get her opinion and even call Carol Langford if I feel I have too. I just don't want to put this off, because I can easily keep making up excuses ( denial).
Please feel free to write your thoughts on your progress. Again we are all in this together.

[pberggren1]

I know what you mean about excuses and denial. And don't hesitate to call Carol if you are able to do that. She is one of the best in the world with WG.

[elephant]

Thanks, hope your feeling better.

[Sangye]

Elephant, what are your usual symptoms that tell you the Wegs is on the rise?

I've found that if I list them and then give each one a score (1-10) for severity at this moment, it's a great way to bypass the denial and uncertainty and get a more objective sense.

I started lowering my pred a week ago by 1/2 mg. I've been on 4 mg/day for months and planned to drop 1 mg/month. My gut said to try 1/2 mg first and see how it goes. I've developed some symptoms that concern me, but I also got overexhausted the past several days--that could cause the symptoms, too. I'm trying to decide if I should stay at 3.5 mg and rest for a few days before re-evaluating, or bump it back up to 4 mg.

Here's my scoring for my early "tell" symptoms. (These aren't all my symptoms, just the ones that indicate active Wegs for me)

0=none, 10= worst possible

Joint pain outright= 3
Joint pain following activity= 3-4
Joint pain at night=0
General stiffness=3
Pain in thumb and 1st finger= 0
Fatigue unimproved by resting=2
Extreme fatigue/weakness=0
Low grade fevers=0
Sweats=0
Blood streaks from nose= 1
Vasculitis rash=1
Insomnia=0
Fluid in ear=0

14 points out of 130 possible: Okay so my decision is easy-- stay at 3.5 mg, rest and re-evaluate in a few days

Some of those symptoms seemed bigger in my head, but when I went to score them, I realized they weren't as bad as I thought.

[elephant]

Thank you Sangye for the, " Wegeners score symptom list". That is exactly what I do for my body scan except the answers are either " yes or no" I like your point system.
What does a vasculitis rash look like for you?
My symptoms when I had the big flare in March 2009 ( water in ears, hearing loss in that ear, fatigue, sinus pain, feeling terrible), then it went from bad to worse, which lead me to the ER and being admitted.
I read Carol Langford notes and she stated that it may be hard for me to go below 5 mg of prednisone secondary to my sinus/lung involvement. I will do the 4 1/2 mg of prednisone starting in Feb. I am hoping the veramyst will help me in that respect. I am monitorin myself very closely right now. Sangye when do you cellcept?

[Sangye]

The scoring part is new to me, too. I actually discovered it on a financial info website--useful for making objective decisions when there are emotions involved. There's something about focusing on the individual score that puts it in perspective. Also, if one symptom is the BIG "tell" you can give it more weight in the final calculation.

We're planning to restart Cellcept (at 3,000 mg--max dose) when the rtx has gotten the Wegs under full control. The plan is to repeat a month of rtx in the spring and when the B cells begin to recover, go back on Cellcept. I'd like to think that the rtx will work so well that I won't need Cellcept to maintain a remission, but I'm okay with being on it if necessary. I JUST WANT REMISSION. (For Pete's sake)

[elephant]

ME TOO! I have a question for you, when your done with the rtx, how do you know that it worked so well that you won't need Cellcept?

[Sangye]

I'm not sure. I imagine I'd be feeling so good we'd just try decreasing the dose? I'm having a hard time picturing feeling even close to good that this is just pure speculation.

[elephant]

This rtx is going to work for you Sangye, you will just have to try the Cellcept out and most likely decrease the Cellcept very slowly , by tricking the WG. We are all a bunch of fighters. so we are going to beat this WG!

[Barbara1966]

It’s been 6 months from the date I was diagnosed with WG (I was diagnosed pretty quickly-the problem started in middle of May and I was diagnosed in August). For all of these months I do not see the light on the end of the tunnel. It’s been a rollercoaster from day one, when the prednisone dosage was decreased to 35 mg, every thing just went down hill. I was not able to climb 12 steps without stopping in the middle of the staircase and needing to relax, not able to walk around whole grocery store without getting out of breath. From the middle of the December when prednisone was increased to 60 mg and cytoxon changed to 150 oral, I felt much better, I did have 17 great days, but then last Friday I ended up in the ER for difficulty of breathing, every breath was so painful even talking was difficult and I was scared of having an infection. The Ct-scan and X-ray came out clear, no infection, or inflammation they just gave me pain killers and after 5 hours sent me home. Today is a good day.

On top of that I got approved for long time disability and yesterday I went to my work place (that I worked for 15 years) and cleaned up my desk. I was heart broken after all these years but I need to do what was right, I didn’t want them to call me and ask to clean it, I want do it myself, on my terms.

Do I ever gone be able return to work??????? Why am I not responding to the treatment quicker like others are? I follow every doctor order, my medication taken exactly to the minute, every blood work done exactly same day of the week. I still cannot get there. I’m very discouraged and disappointed right now.

Barb