Anyone have bizarre auto-immune issue connected to CLL?

[Lauriesue4]

Looking to see if anyone else out there has dx of CLL yet not the typical cll picture. I’m inquiring for my dearest friend whom was dx 3 years ago. Was w/w for 1.5 years, had to start treatment. Did ibrutinib, now started rutuxin.... multiple blood/platlets transfusions, nuelasta shots for extreme neutropenia etc. All initially responds well and then stops. Big time CLL guru’s are stumped. Looking to see if anyone else reading has experienced something similar. Any responses, greatly appreciated!

[AussieNeil Partner Founder Admin]

Welcome Lauriesue,

It's good of you to try and find someone similar to your friend, but with various forms of autoimmune complications reasonably common with CLL, a bit more information would help members who may be in a similar situation reply. What specific tissues are being attacked by the auto-immune complication? Is it particular blood counts, the skin or what?

Have you read this CLL Society article on CLL Autoimmune complications?

cllsociety.org/2017/04/auto...

Neil

[Lauriesue4 in reply to AussieNeil]

Thanks for sharing the article I have passed it along. I am actually a very far leftvalternayive medicine believer as my father was an MD Homeopath. I have been let down too many times by main stream medicine and cured by integrative care. The underlying issues here in my friends situation is a history of Guillians Bar A Syndrome, Lyme Disease, Allopecia, Parvo 19, etc.... all auto-immune related diseases. The fact that they are saying his symptoms and issues are not the typical CLL way I’m convinced there is an underlying root cause from his history. Sadly my brilliant father passed away and I’m just trying to help the best I can with what I know. So just curious if anyone on here has similar issues and if they seemed care through an integrative, homeopathic, functional. MD or had more to share. My friend is along the ride experimenting with all the CLL pharmaceutical options. He has great Drs..... but when your Drs start scratching their heads unsure what to do- to me that’s a time to try a new path. Alternatives are my savior. Thanks for the reply and I look forward to more.