Steadiness of recovery with rituximab?

[Cat P.]

A couple of weeks ago I finished the four infusions of rituximab. Hurray! I began feeling much better by the last week, which was so encouraging. I had energy to do things like put books on shelves, etc.

A couple of weeks later I am feeling worse. It has been an extremely stressful time at work, and I am concerned that the stress has set me back physically. Is this a silly concern? I am a worrier and worry that my recovery has stalled, or the extreme stress has counteracted the treatment, because I am feeling pretty bad in the last few days. Is that normal? Did I ruin my progress by going back to the stupid job? It was so awesome to feel better for a while. Am I fretting too much? I'd welcome hearing about your experiences.

[drz]

A couple of weeks ago I finished the four infusions of rituximab. Hurray! I began feeling much better by the last week, which was so encouraging. I had energy to do things like put books on shelves, etc.

A couple of weeks later I am feeling worse. It has been an extremely stressful time at work, and I am concerned that the stress has set me back physically. Is this a silly concern? I am a worrier and worry that my recovery has stalled, or the extreme stress has counteracted the treatment, because I am feeling pretty bad in the last few days. Is that normal? Did I ruin my progress by going back to the stupid job? It was so awesome to feel better for a while. Am I fretting too much? I'd welcome hearing about your experiences.

Usually with the IV treatments or even many other transfusions they include a good dose of steroids to minimize the risk of side effects. This will often result in a burst and energy and feelings of well being but it wears off quickly. The longer and more stable feelings of improvement take a bit longer. Fatigue after IV treatments is often present and fatigue is one of the almost universal symptoms of Wegs. Learning to pace yourself and adjusting to your new "normal" is a process and can take awhile to find the right balance. It helps to get as much rest as you can but you often may need to push yourself beyond your comfort zone due to other necessary concerns. It helps to scale back as much as you can and to ask for help to do the things you need to do to maintain yourself. I found this difficult to do but it got easier for me with practice. Good luck and best wishes for quick recovery.

[whatthewhat]

I really liked drz's reply. I will just affirm that Rtx takes roughly between 6-8 weeks, sometimes as much as 10 weeks, to fully "sink in" to your system. I really believe in it - the way it targets the exact cell it should is extraordinary - but it takes awhile.

It might be helpful to know that I find it helpful to think of Rtx as stopping the advancement of the disease. It may shrink granulomas, but it can't undo neuropathy or repair cartilage or rebuild muscle mass. Besides the joint pain and exhaustion, a Weggie may have some damage to their body they also need to incorporate into that "new normal." What Rtx can do, however, hopefully, is save kidneys, noses, hearing, etc, and lives. Best of luck to you.

[Alysia]

Hi cat person,
It took me 3 months until I started to feel a difference after my first rtx and 9 months, during them I got a second round - 6 months after the first - that my nose, which was bleeding and crusting for years, finally calmed down, and my C-anca became normal.
Each one is different and has his own timings on how fast rtx works for him. Meantime keep an eye on your symptoms and go to the dr. If you dont feel well, because it can also be another issue, not wg related (like flu or an infection).