Hopeful,
Really interesting to know how people metabolize cyclosporine so differently. My mother's trough levels were between 250-300 before they dropped the dose slightly. It is checked with every blood draw twice a week so I have a lot of data.
Since dropping it to 200mg/day, her trough levels are hovering more between 175-200 which as far as I know is still plenty good enough, plus some other immediate differences I noticed were her bilirubin numbers going back to normal (had been slightly elevated around 2.1.-2.5, is now 1.0) and also her LDH trending downward (it had been creeping up to 550 sometimes!)
My mother also told the hematologist she wants to be weaned off the prednisone. Especially after I sent her the article by Dr. Young which even explicitly states:
Corticosteroids are of unproven benefit and inferior in efficacy to conventional immunosuppression regimens, but they are more toxic and should not be used as therapy in SAA.
One thing I never mentioned is that I don't even live in the same city as my mother. This has made things incredibly diffcult with wanting to support her as much as I can while also not losing my job. (We were told no more work from home about two weeks before my mom ended up in the ER...) I've been visiting as often as I can with the FMLA time I have. Thankfully I don't live too far away.
In September, during my visit my mom was doing fairly well overall. There were some side effects of the medication, but she was still able to get around, make simple meals, get up and down the stairs fairly normally, etc.
I wasn't able to visit during October because my partner came down with Covid (despite us both being vaccinated). Once that was cleared up I visited again.
When I was finally able to visit again in November, my mom had far more profound side effects: fairly severe muscle weakness, strong tremors, a swollen face and ankles, skyrocketing blood pressure, etc, all of these causing a tremendous nosedive in quality of life.
What changed between these months?? The only treatment I know that changed: The hematologist doubled her prednisone dose. My mother does not remember exactly why he did it, but it likely had to do with how dropping the prednisone dose also dropped the WBC. But isn't that expected?
I'm wondering if the prednisone was having an effect on the cyclosporine, increasing the toxicity of both.
I think my mother has successfully bullied her way into being weaned off of the prednisone now, so I hope there will be some improvement going forward.
But I also worry that because she also started Exjade during this time, the hematologist will attribute any possible drops in blood counts to weaning off prednisone instead of a side effect of Exjade. (Why am I the only one thinking about this???)
A consultation with the NIH would be really fantastic, but I don't think right now my mother would be able to actually travel that far (about 5-6 hours from us) so unless they do telemedicine visits, even just to give a second opinion or re-evaluation, I don't think that will work. I appreciate the thought though.
Matthew42,
Really fantastic to see your mother's ANC has improved and is holding steady. I think that is still a very good indication of a response, even if your mother will still need transfusions. The hope is to lessen the frequency of the transfusions, even by a day or two at first. The progress is slow and tedinous, isn't it? It's so hard to not hinge all of my hopes and emotions on seeing what numbers pop up this time...
Thank you very much to both of you for continuing to respond, I really do feel so alone in this and being able to have anyone to talk to who knows what it's like is so amazing and important!!
Happy Holidays to you both as well!