Way Sick

[Sangye]

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. Love that quote.

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.

Most of what I've learned about pred is from Dr Seo. He really understands pred and how much more difficult it is to taper the longer you're on it. Rheumys work with pred all the time but he's the first one I've met who really gets it.

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.

Best news I've had all day!

I am also changing doctors here. That is a little scary but I am hopeful to get someone I can work with.

Second best news I've had all day!

This is all great stuff, Kirk.

[drz]

Brooke, we are looking at inflammatory markers (ESR and CRP) and checking if the type of B cells killed by rtx are returning.

What kind of numbers for ESR and CRP are good for you? Are the B cells removed by plasmaparesis treatment? What test measures those?

Is the cold any better? When will you get results of sleep study?

[dunkie2202]

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. .

Hey me2,
They have been giving me 1000mg Cytoxin IV every mth and last week forgot to give me the anti nausea drug. I was lucky enough to have some Maxalon at home ( nausea tablets ) and just used those when I found it necessary. You can take them three times a day. Prescription needed.
I've never thought of using promethazine for vomiting. I thought they were only for allergies. I personlly take them for nerve rash to stop me from scratching. They will make you sleep though.....but being on pred that would be a good thing aaaaahhhhhhh sleep lol

[Sangye]

drz, as long as ESR and CRP are within normal range it's fine. However, my inflammatory markers tend to not increase until I have severe activity. Go figure.

B cell count is measured in a routine WBC count but when using rtx they also order a CD-19, which measures the sub-type of B cell that is depleted by rtx. When rtx is still working the CD-19 is undetectable. As rtx starts to wear off it begins to increase.

[drz]

drz, as long as ESR and CRP are within normal range it's fine. However, my inflammatory markers tend to not increase until I have severe activity. Go figure.

B cell count is measured in a routine WBC count but when using rtx they also order a CD-19, which measures the sub-type of B cell that is depleted by rtx. When rtx is still working the CD-19 is undetectable. As rtx starts to wear off it begins to increase.

Thanks for the helpful info. Since you are feeling so lousy right now are any of these markers suggesting any problems or showing any indication of what treatment might help you? We are hoping that things will start to improve for you sometime soon. Being down to one spoon early in day doesn't feel good and we want you to get better.

[me2]

Hey me2,
They have been giving me 1000mg Cytoxin IV every mth and last week forgot to give me the anti nausea drug. I was lucky enough to have some Maxalon at home ( nausea tablets ) and just used those when I found it necessary. You can take them three times a day. Prescription needed.
I've never thought of using promethazine for vomiting. I thought they were only for allergies. I personlly take them for nerve rash to stop me from scratching. They will make you sleep though.....but being on pred that would be a good thing aaaaahhhhhhh sleep lol

Hey Dunkie, Thanks for the information on your Cytoxan adventure. It sounds like you did ok so I should too even though I'm up on the top half of the world where things work differently. I didn't know promethazine was used for other things either. Now I'll have to do a little research before my big day and make sure I have the type of thing I need on hand.

Sangye, thanks for your comments above and your info about Rituxan. It gives me some questions to ask the docs now. I don't think my CD-19 was monitered at all so I question as to whether Rituxan didn't work for me.

[Sangye]

drz, rtx worked great for me. Doing another round is all that is planned. It's just a question of how soon do we do it.

[Sangye]

Well I'm just feeling lousy. I'm over the cold but I can't get rid of this dry cough. I cough if I take a deep breath or even a semi-deep one. I'm just wiped out, too. And lots of joint pain. Last night I was just sitting and every part of my body was hurting bad. No fevers, chills or sweats though.

I emailed Dr Seo a week ago but didn't hear back. I'm going to email him Monday morning and ask about my labs from last week and if I can do another round of rtx beginning Feb 1. I have a couple of urgent things to get done before the end of January and I think I can wait until then.

[pberggren1]

I wish I was there with you Sangye.

[elephant]

Sangye, I think you need to contact your doctor now, I am concerned. Sounds like Weg is moving fast on you. The cough and all over body ache is concerning.