Way Sick

[elephant]

Sangye glad you on top of this. Need to get this straighten out so that if it is a infection is doesn't cause a flare....and if it is a WG flare need to put out the little fire. I know you already know this, but I like to say it.

[JanW]

Sangye - you're due for another round of rtx soon, aren't you?

[Sangye]

Thanks everyone. drz, I don't have upper respiratory involvement so the congestion wouldn't be from Wegs. Phil, it broke my heart that you were crying about me! You have so much on your plate. Please don't worry about me.

Lisa Marie, that's good info about Augmentin. I suspect the problem is the amoxicillin in it, since I had a problem with straight amoxicillin in 2007.

I saw my chiropractor today. I've been having trouble with diaphragm function for many months and it's been really bad lately. That can keep you from taking a deep breath and can prolong a respiratory infection and cough. I wanted to get that corrected and see how I do before calling my PCP or emailing Dr Seo.

[Sangye]

Sangye - you're due for another round of rtx soon, aren't you?

We're hoping to wait until March--a year since the last one. I have a feeling it'll be sooner, maybe February.

[elephant]

Sangye, it sounds like your trying everything before you call the doctor....sounds like someone I know.

[Sangye]

Elephant, don't worry, Dr Seo already knows about the increasing Wegs symptoms because I saw him Dec 15. And my symptoms right now are so unclear that my PCP wouldn't be able to sort it out. Sometimes you have to let a few days pass to get an idea of what's going to resolve and what isn't. I don't want to take antibiotics if it's just a lingering cold. (Especially not after what happened with just 2 day's worth)

If the diaphragm isn't working properly you can't take deep breaths and clear out the lungs. It also causes shortness of breath.

[Lightwarrior]

I'm so sorry to hear that things are not well with you Sangye. Can your chiropracter friend impact the diaphragm?? You need a functioning diaphragm to breathe.

[Sangye]

Yeah, it's been a chronic problem. I saw him yesterday. We tried something different that will hopefully correct it.

[Sangye]

Man, I'm just not doing well at all. I seem to be over the cold but I have a bad dry cough. I can't take a deep breath without coughing. And I hurt everywhere-- literally every joint is sore. Still really weak, too. I emailed Dr Seo yesterday but didn't hear back. (I made sure his receptionist passed the email to him) I did monthly labs at JHU today so maybe by next week we'll know what's going on. I feel exactly like I did when my last flare was cranking up.

I'm feeling pretty down about all this. I got dx'ed in June 2006 and except for 2 two-week periods, I have never had a time where I felt okay. Last year I finally got into remission but within a week had the acute hearing loss/ vertigo thing and had to go back on high dose steroids. It should've only been 2 weeks but it turned into months. It messed me up so badly and now I can't get below 3mg pred. In November I felt like I was stabilizing a bit from all that, then the Wegs symptoms started cranking up. Then the cold from hell, and it's gone downhill from there. And if it is Wegs making me feel awful right now, we'll re-treat with rtx which makes me feel even worse for 6 weeks. Something to look forward to.... I'm feeling hopeless about ever getting out of this stupid hole.

[drz]

Man, I'm just not doing well at all. I seem to be over the cold but I have a bad dry cough. I can't take a deep breath without coughing. And I hurt everywhere-- literally every joint is sore. Still really weak, too. I emailed Dr Seo yesterday but didn't hear back. (I made sure his receptionist passed the email to him) I did monthly labs at JHU today so maybe by next week we'll know what's going on. I feel exactly like I did when my last flare was cranking up.

I'm feeling pretty down about all this. I got dx'ed in June 2006 and except for 2 two-week periods, I have never had a time where I felt okay. Last year I finally got into remission but within a week had the acute hearing loss/ vertigo thing and had to go back on high dose steroids. It should've only been 2 weeks but it turned into months. It messed me up so badly and now I can't get below 3mg pred. In November I felt like I was stabilizing a bit from all that, then the Wegs symptoms started cranking up. Then the cold from hell, and it's gone downhill from there. And if it is Wegs making me feel awful right now, we'll re-treat with rtx which makes me feel even worse for 6 weeks. Something to look forward to.... I'm feeling hopeless about ever getting out of this stupid hole.

Anything we can do? Would flowers help? Sorry you are feeling down now. You generally seem so able to handle the stress of this difficult disease so it must be hard to be so down now. What does Rituxan do to you that makes you feel so bad? I 've only had a couple IV of Rituxan early in my treatment and don't remember much about any side effects exccept my bladder locking up and creating bladder infection. Colds really sap your energy so hope you can get some rest. Would a strong narcotic cough med help you get some rest? just a thought. We care about you!