Rituximab Round Two

[Lightwarrior]

Sangye,
I'm sorry I hope all is brighter for you in the morning. Reading your advice everyday and watching the way you take care of us all feels like we get to walk with you often.

[Sangye]

Thanks you guys. I woke up feeling very unwell, but less joint pain than last night. Bright red, swollen shins-- a good (but puzzling) predictor of Wegs for me. So I'm at 4mg again today. I slept very well. I'm wondering if the sleeplessness the night before was Wegs activity-- another good predictor of activity for me.

I have a tendency to analyze things to death. I gotta let this go....

[JanW]

Sangye - I hope that you will start to feel better and that this is just a little bump in the road. I hear you about going for a walk -- something I haven't been able to do since summer. It does really wear you down.

[pberggren1]

I hope this isn't WG trying to pop it's ugly head out Sangye. I wish we could go for walks together with your dogs.

[Sangye]

My dogs are so much fun to walk with. I used to hike with them every day when I lived in the spectacular northern Arizona mountains. I was reflecting on that yesterday. I remember being very grateful to live there every single day, but I don't remember being consciously grateful that I could hike, bike, etc... on a daily basis. Maybe when I saw someone in a wheelchair, or had a patient who was unable to walk. I took so much for granted.

[Col 23]

Hi Sangye
You have come so far just take it slowly. Remember that lack of sleep can cause depression and muck with your thoughts. Sounds like you need to rest as you advise everyone else, I mean that with your very best interest at heart. I have noted all the things you have been doing in the last week and it doesnt sound like you are resting much. I dont know alot about WG yet but I know tapering the WG can make you extemely tired and have noted either forced rest or have to rest is the only thing that helps.
thinking of you
Col 23

[Col 23]

Hello lightwarrior
How are you going after your flare.
Col 23

[Sangye]

Thanks, Col. Except for yesterday, I took naps lasting several hours on each of the days I tapered pred. Depression definitely worsens when I'm bottomed out physically. It's been an issue for some time now. *sigh*

[Col 23]

I think we often forget that this WG affects us holistically when we are being attacked. It really mucks with our confidence. I actually snapped at someone a few weeks ago when they told me I had to continue to be positive and said why do only the negative people die? I felt so bad. I also have so many melt downs in the shops Im embarrassed to return to some. Just wondering if any one is having trouble with short term memory loss or if this is a side affect of the drugs we are on.
Col 23

[Lola]

Sangye, hang in there, girl. I am going through prednisone tapering, myself. Friday was a horrendous day and I cried at work when one of the docs asked me, "How are you doing?" What a blubbering idiot I was. I've noticed the increased joint pain and other weird symptoms which scare me to death. This taper has been super slow, too - because of your excellent advice on that matter.

I noticed that my symptoms were intensified directly after my Rituxan infusions and that scared me a lot. I also notice, as Col23 did, that you are not resting nearly enough in my book, or at least as much as I had to after my Rtx treatment.

Like you, I would LOVE to go for a walk, and look at people on the streets in an entirely different way now. I can barely make it into work without feeling like I need oxygen at this point - (well, maybe that statement was a bit dramatic).

If your body IS trying to have another flare, wouldn't the Rtx knock it out once it has destroyed all those B Cells? Is some kind of disequilibrium in the immune system, caused by the B cells being destroyed, causing these increased symptoms???

Take care of yourself, OK? I know you know this, but remember that with Ritx you don't just start feeling better one morning. It is a most subtle improvement with many bumps in the road, especially for someone like me who does constantly analyze EVERYTHING!!@# to a ridiculous degree.

My rheumy reminded me that tapering prednisone can be a bit bumpy, as well, and to try to power through it without causing myself another flare. HAH!