Way Sick

**Sangye** · 01-08-2011, 02:48 PM

Thanks, drz. I'm usually a very resilient and hopeful person. I've gone through periods with Wegs where I feel hopeless about things improving. I think that's pretty normal, considering how it's gone.

I don't know if it's the rtx or the 100mg solumedrol that I get along with it, but I get extremely weak soon into it, and by the time the infusion is over I can't even walk out. I stay very weak until the next infusion. Each week I get weaker and weaker, barely making it through the month. I've done the 4-dose protocol both times and will likely do the 2-dose protocol next time. Maybe it'll be better in between infusions.

Fortunately I'm not coughing when I lay down. That's usually the case with me, whether I have pneumonia or hemorrhaging lungs. I've been sleeping okay, but last night I was in tons of pain. Thanks again-- I appreciate your kindness.

**pberggren1** · 01-08-2011, 02:52 PM

I so understand what you are going through right now. If I were there I would hug you and not let go. Have you tried using a humidifier at night to help with the dry cough? I sure hope it is not the Wegs flaring up for you. You have to drive all the way to JHU once a month just to have blood work? Can't they do it at the local hospital or lab?

**me2** · 01-08-2011, 02:59 PM

Sangye, So sorry you are still feeling down. I am a very optimistic person like you and I have at times felt myself tested to the limit.
My scenario has some simularities and some differences from yours. I have been batteling my flare for ten years now but with some longer periods of time of feeling ok. Not great but ok. This illness knows no decency and is not a respector of persons or effort. Having said that, it can also get better unexpectedly. I am doing better in recent times than my fears would have let me believe possible. I've still got a ways to go to say I can let up on working on it.
I wish there were something I could do for you. You have always been a great help to me. I wish you lived closer I could bring over some veggie soup.
Its not a cure but it feels good. If there is something that I can do just say the word. I'm in an up time and I have some time right now.

**Sangye** · 01-08-2011, 03:01 PM

Yeah, you definitely know what I'm going through Phil! The cough isn't bad at night, it's all day long. I've felt the Wegs waking up since November but Dr Seo wants to wait until my labs show it and my symptoms get bad enough to require re-treatment. I don't have any option if rtx stops working or I become allergic to it, so he wants to limit its use in me. I get that, but it's also depressing to think that I have to crash so badly before we re-treat.

I go to JHU weekly anyway, and I trust them to do my labs properly. The local labs and hospitals are awful. It's worth the drive.

**Sangye** · 01-08-2011, 03:02 PM

Thanks, Kirk. I really appreciate that, and I'm glad you're going through a good period. I hope it gets better and better for you.

**Jack** · 01-08-2011, 10:20 PM

All my sympathies go out to you Sangye, I just wish that I could do more to help. I know everyone on the forum feels the same and we would all go out of our way to help if it was at all possible. I may have had it rough in the past (and also more recently come to think of it!), but at least I had the occasional break or could see a good prospect of improvement so it reminds me how lucky I am in many ways.
I hope you are receiving some good support from friends and that you will soon have at least a few good days to improve the mood.

**renidrag** · 01-08-2011, 10:48 PM

I am sorry to hear of this setback Sangye. Will keep you in our prayers.
Dale

**elephant** · 01-09-2011, 01:17 AM

I am sending you a big hug to you Sangye. I am so sorry you are going through so much pain. Sangye maybe your one of those people who can't get below 3 mg of prednisone. Dr Langford said that she be suprised if I was able to get below 5 mg. Please don't lose hope, and know we are here for you always!