My husband has been told he may need to start rituximab to combat the immune-related skin lesions he's had for the past two months. Prednisone (now at 60 mg/daily--skin clears up but then as soon as he gets down to 20 mg or so, lesions return), valacyclovir, and various other medications have not been able to bring them under control. He was diagnosed this summer and has been on w&w...his wbc and lymphocyte levels were actually quite low so he had not anticipated needing treatment so soon.
Three questions:
1. Has anyone else had a similar situation? Is this skin eruption related to the progression of the disease, or is it just an unfortunate side effect of a compromised immune system? My understanding was that it was best to hold off treatment as long as possible. On the other hand, the prednisone is not a long term solution.
2. How disruptive is the rituximab regime? Doc said he would need 4 to 8 treatments (depending on how he responds), weekly. He seems to think he can do these and just go back to work the same or, at latest, the next day. He's an active man in his 50s -- is this realistic?
3. For caretakers: How do you support your partner but keep things real? For instance, we'd need to round up support to get him to 8 day-long treatments 1.5 hours away -- I can't do it all. But he's convinced he either won't need that many, or he can somehow go by himself.
Thanks for your help!
I have had 20 rounds of rituxan... usually monthly but the last 8 were every two weeks...
I don't think he should be driving on it, due to the premeds, usually benadryl, certainly zones me out for a few hours after...
Could arrangements be made to have infusions closer to home? There is a new 10 minute rapid sub-cutaneous type of rituxan, but its just being approved, in most counties... worth asking about...
roche.com/media/store/relea...
~chris
Good points. Either of these (close to home and/or faster treatment) could be super helpful.
How are you doing after 20 rounds?
Actually the rituxan was always in combination with other drugs.. never alone... the last 8 times was with Zydelig (idelalisib) a new treatment... which has brought me for very poor shape to nearly normal on all blood counts... so its been stellar!
~chris
That is the greatest news, thank you for sharing it!! Made my day!
Does your husband have leukemia cutis? I knew someone 10 years ago that had it and rituxan cleared it up... not sure if it ever returned... his CLL did return , but not the skin aspect.
No, it's an anonymous rash -- probably a crazy response ot an infected bug bite. Lesions ranging in size from quarter-sized to 3-4 inches across.
Wierd CLL has insect BITE LIKE reactions...
onlinelibrary.wiley.com/doi...
Yes, this is what they think it is. But really like nothing I've ever seen. Think Bubonic Plague.
Yes. Benadryl totally knocked me out. I was able to cut back to one-fourth of the Benadryl dose which made a huge difference. Still knocked me out at least a good hour during treatment, but was not drugged up when leaving hospital after treatment & was able to function normally.