As you might have gathered not much has happened on the health front for a few months (which is good news) but I thought I would update you now that I have some more news.
In mid February I had another consult with a specialist Dermatologist at Royal Melbourne who has established a clinic specifically for GVHD issues. Dr Ryan D’Cruz was able to check me out in person (the first two consults last year were via TeleHealth) and confirmed that good progress had been made with my ECP treatment, which is on-going.
I raised some concerns with Ryan that some areas of the Sclerodermatous GVHD had regressed slightly. Unfortunately with this presentation of GVHD there is no blood test or result that will definitively show what is happening. Results must be based on clinical observation. The changes in skin condition are very slow and might take months to be recognised.
For me this is quite a concern as any further regression of my situation would be far from ideal.
With this in mind I decided not to take any chances and discussed the options available to increase my treatment. Ryan suggested increasing the frequency of ECP back up to fortnightly but left it to my Hematologist, Amit Khot to make the new plan. He also suggested that Amit look at prescribing a relatively new drug, Ruxolitinib which although not on the PBS for Sclerodermatous skin was known to be highly effective as an immunosuppressant.
My consult with Amit resulted in an increase in Prednisolone to 9mg daily and a doubling of Tacrolimus. He also prescribed Ruxolitinib (which requires special approval) to gain funding.
I am back on monthly consults with Amit and will remain on monthly ECP sessions for the next 3-4 months. Hopefully this will lead to another slight improvement in my condition.
As I explain to people my skin condition is not restricting much of my activity. I can do most exercise activities (bike, walk, stretches, flying, gardening, farm work etc) although at times the pain level will vary.
So overall I consider myself to be pretty lucky but as with all GVHD issues (80% of bone marrow transplants suffer from GVHD) we don’t know what is around the corner. According to Amit the presentation of GVHD will ‘wax and wane’ over time with gradual improvement expected.
As there is not much more to report I will continue to keep this blog open and will update everyone as and when there is some new information to report.