Help Needed

[NikkiNicole]

I had my RTX infusions in June and it is now mid-December and so far, my blood work shows that my B-Cells still haven't come back yet. I've started feeling a bit rummy and have a very swollen and painful lymph node on the left side of my neck. It hasn't progressed past just feeling off and the node being painful. It's been three days.

My question is ... is my lymphatic system responding to the B-cells returning? Am I going to be sick? Those of you on RTX ... how slow is the progression of getting sick? Does it smolder and then hit you? Or is it right away? Because I feel like whatever this is ... it's brewing into something big.

I hope everyone is well. I'm doing good on this program. I have lost 44 lbs and have been exercising over an hour a day. Except the last two days, and I am certain today I won't be exercising. I was up to 10k steps a day ... and now I have no energy to walk a little bit. It's rather frustratining. Everyone is telling me I need to just rest and let my body do it's thing but ... I also feel like I will fall into bad habits!!

[MikeG-2012]

It was explained to me that explaining b-cell rebound for people who are on Rituxan is counter intuitive.

People whose b-cells rebound quickly are less likely to have more symptoms.

People whose b-cells rebound slowly are more likely to have more symptoms.

I have had very few symptoms the last three years. I've had other issues (broken foot, bad knee, etc.), but wegs has been quiet. I've had 14 RTX infusions now, and my doc will keep ordering them until there is reason to stop (FDA protocol changes, Insurance, etc.)

RTX protocol is to have a treatment (2 infusions two weeks apart) every six months. Maybe you are due for another RTX round?

I'd definitely go in to have the lump checked out!!

Take care!!!

[NikkiNicole]

I'm at six months right now. Dr. B says she will reorder two more infusions when I start to feel crummy and my blood work shows that the Bcells have returned. So far, they are staying away. I get blood work again at the beginning of January so we'll see what the panel says then. I think it's just a swollen lymph node, judging by how I am feeling I think it's a slow brewing illness of some sort. Little worried about what i's going to brew into.

[me2]

For me symptoms returned quickly. Within three days I was having a flare. I don't know if it is that way for everyone or if it would even happen that way again for me. I was on a six month protocol and kept falling apart at 5 months. So, my doc says he has other people who get Rituxan at 5 month intervals. I was feeling pretty good at 5 months so I decided to see if I could go longer. I got to 6 months and one week before I flared.
In the future I am not going to wait and see how I feel. I've been getting beat up by this disease for too long. I'm going to get an infusion at 5 months no matter how I feel.

My doc says he has a patient who received infusions for three years and then was able to get off of all meds. He wants me off prednisone before even thinking about getting off Rituxan.

I feel for you. It is really hard to sort out symptoms sometimes and to know what to respond to - and how.

[Alysia]

I get rtx every 6 months. I was late 6 weeks to get it and was out of remission. My wg dr. Says that it is better to get it every 6 months, no matter what. It is better, according to him, NOT to wait for the wg to raise its head. If we keep it sleeping long enough, there is a chance that the immune system will "reset" and will stop attacking itself. I know there is a controversy about this issue.
As for the node lymph, it doesnt sound wg related, why do you think it is ?

[Jaha]

I was really late in getting my rtx, a little over 4 months late. I went into a flare and had to go back up from 7.5mg preds to 20mg until I could get it scheduled again. I had all kinds of signs of a flare, but could not get in for the infusion. I now have to start tapering once again, which is very hard on a person. Please go with the six month plan, even if your numbers don't look bad, it still could be brewing up something. Take care of yourself and congrats on the weight loss and exercise program!

[Joyce10100]

I hope you are doing better, Is your walking improving ? I am wishing the nodes in your neck have improved and you have been to the dr. I had a very progression toward a diagnosis . You may be able to halt one by your drs. procedure. Good luck.