Way Sick

**Brooke** · 01-11-2011, 02:42 AM

Sangye, I hope you start feeling better real soon. Sorry you haven't been feeling good lately. When was the last time you had the Rituxan Infusions?

**Sangye** · 01-11-2011, 03:23 AM

Jolanta, measuring the O2 levels is just part of the sleep study (though I'm glad you're at least doing that). They measure if you stop breathing, how many times, and when it occurs (ie during REM sleep or not) and lots of other stuff. I stopped breathing 45 times an hour during REM sleep but they say that's normal. They didn't record my breath stopping at other times and that's why they said I didn't have sleep apnea. I'm doing the repeat study tonight.

Brooke, thanks. I did rtx last March (2010).

**Sangye** · 01-11-2011, 03:29 AM

Jolanta, I think it's great that you're going very slowly tapering the pred. Dr Seo really emphasized this (many times!) for those who've been on pred for awhile.

Dunkie, they would never stop higher dose pred just to do the AM Cortisol. It wouldn't be accurate to do that, because obviously your adrenals won't be working. You have to be off pred completely to do the test, or maybe just on 1 or 2 mg. In my case, we think my adrenals are damaged enough to require a tiny dose (0.5 to 1mg) pred indefinitely, regardless of Wegs activity.

**Brooke** · 01-11-2011, 06:35 AM

Sangye, do you know when you will do Rituxan again?

**Sangye** · 01-11-2011, 07:04 AM

We're hoping to make it to March, but I'm waiting on labwork.

**drz** · 01-11-2011, 07:27 AM

Originally Posted by Sangye

We're hoping to make it to March, but I'm waiting on labwork.

What lab work would indicate an earlier need for Rituxan treatment?

Is the cold getting any better?

**me2** · 01-11-2011, 08:03 AM

Sangye, My thoughts are holding vigil with you as are many others here to see you get better. As a friend in China who cares about me just said "I do hope you will gets better and better until someday there is no better to go. "

Thank you so much for the fine tuned insight into prednisone reduction. I just read a pretty good web site about it but I still had questions. Questions you have now anwered. What is amazing is that I can guarantee my doctor would give different answers than you have and would disagree with what some of what you have said. I know from experience that your information is accurate. What I mean is that I think many doctors do not understand the fine points of prednisone reduction and use by patients who have been on it long term. I guess there are not enough of us for them to get the idea. I remember when I could just change doses willy nilly and no effect. Now it is embaressing the amount of difficulty I have going down ONE mg. No more mr tough guy.

I have big news to add. In trying to improve my current treament and secure better consultation on my future treatments I am making the trip to Cleveland to see Dr Langford. I am very excited to go. I have read her published papers and followed some of her patients here and I even met her at one of the conferences.
My current doctors made some simple mistakes with big consequences recently (again) and I just want to talk to someone who really knows this disease.
I am working on my summary of care. My current state and questions about ... well, about all kinds of stuff.
I am also changing doctors here. That is a little scary but I am hopeful to get someone I can work with. I will of course ask Dr Langford if she can recommend someone here.
I went to a WG conference in Cleveland a few years ago so this also feels like a somewhat of a return pilgrimage. Ironically I am not as sick as I have been the past ten years. I feel good enough to walk around, my mind is clearer than it has been in a long time. What a strange time to seek the best help huh? But like everyone else I want to feel like I am on the best program I can be and be as healthy as I can be and not go backwards right away. (I know , a tall order for an old Weggie)

I would be interested in other peoples thoughts about approaching remission. In the past treatment was continued agressively (like it was thirty years ago when I was first diagnosed). One benifit I think may have been a higher remission rate and longer remissions ( mine was drug free for twenty years). Now, to reduce exposure to these toxic drugs the treatments have been fine tuned and toned down. But have they perhaps backed off too much? How do you tell?
In my current postition I have suffered so much these past ten years with books full of episodes and pain and suffering I am ready to err on the side of being continually agressive. I am willing to take a chance on the drugs because the disease has been so relentless.
I feel blessed that I will now get the benifit of one of the great WG doctors to help me take my best shot.

I will share any good stuff that I learn when I get back as so many here share generously from their experience.

PS It is a long story as to why, but I am doing a 500 mg Cytoxan infusion this next Friday with NO anti nausea drug. Has any one else done this or have some suggestions? I have some oral promethazine that I can take. A friend has offered some Maryjane but I don't use it. Maybe I should if it would help. I had EXTREME head pain from the Zofran (anti-nausea drug) I was taking with the infusion. I did one infusion now without the Zofran and NO head pain. So that was good. Weeks of bowel trouble cleared up after quiting the Zofran too.

If anyone reading this is there in Cleveland and would like to meet a fellow Weggie let me know and we can set up a day and time to meet. I will be there Jan25 thru 28.