Has anyone had experience with cyclosporin A? ... - CLL Support
Has anyone had experience with cyclosporin A? My husband has pure red cell aplasia along w/cll & fcr is being suspended for cyclosporin.
Hi LAinNYC,
Given there have been no responses, it looks like your husband's experience isn't that common. I'm sorry Larsnyc is having such a tough time. I hope your husband's medical team are providing you both with the information and support you need.
Neil
Hi, Neil,
Good news to report! My husband's labs are now all within normal, and more importantly, he feels well again, able to walk up hills and stairs w/out resting, etc...
His doctor is currently tapering him off the cyclosporin, and then they'll discuss whether or not to go ahead with the 3rd round of FCR or resume watch and wait in the hopes of new drug approval. Quite a roller coaster....
Great to hear such a positive report after what your husband has been through. He must feel like a new man! Enjoy the respite between treatment - you've both well and truly earned a lengthy spell from health worries.
Neil
I'm so glad your husband is feeling better. I'm in the LA area. Are you from here, but currently in NYC? Many CLL patients are now getting Ibrutinib/Imbruvica - I wish they'd leave the names alone - off label for CLL. If you are in NYC I know that Dr. Furman has patients on Imbruvica and that he was involved in the trials. There are other good CLL specialists there who could also probably get it off label for your husband if it is thought that it would be better for him than continuing FCR. It seems that doctors are divided on which is best for some patients.
We're in NYC...he had to start treatment last August and ibru. wasn't available due to his age (62), no 17p deletion, 1st treatment...
Hi,
I've suffered with pure red cell aplasia for two years I've tried steroids, cyclosporine and rituximab with no response.
I'm due to start methotrexate next week all fingers crossed. Good luck with your treatment xx
