I was a little down in my last blog due to the worrying progression of Sclerodermatous GVHD but I am very happy to report that recent treatments appear to be working.
The progression of the disease appears to be halted and I have noticed a significant improvement in my skin elasticity.
Amit Khot tells me he has “thrown everything at it but the kitchen sink” – meaning he has me on three different drugs Prednisolone – a corticosteroid, Ruxolitinib – an immunosuppressant, and Tacrolimus – another immunosuppressant plus ECP (extracorporeal photophoresis).
Apparently it is a little unusual to provide patients with so much ‘firepower’ but in my situation Amit was not confident just one drug was the solution.
However, ever the scientist he worries that with so many treatments he will never really know which one is working!
Light Treatment
Adding to Amit’s dilemma I had trialed Red Light Therapy (an LED light array in the range of 615-630nm) hoping that I might be able to reverse the fibrosis or tightening of my skin. There is very little empirical evidence and research on this method of treatment and Amit believed I was wasting my time.
Although I certainly received some short term benefits after three months of treatment I discontinued it as there were no signs of sustained improvement. I can categorially say the RLT was very helpful with muscle soreness and cramping – results were almost immediate.
Not to leave a stone unturned I moved on to another light therapy – UVA1 (340-400nm). Unlike the RLT this light therapy is reasonably well researched with a number of scientific studies published for treatment of Scleroderma (a similar skin condition to mine).
UVA1 light treatment
I managed to track down a light machine from the US via a local supplier and have been using this treatment for over a month now.
First results are promising but it is too early to be definitive.
i am also using a massage gun to help soften my skin. I got this idea from Dougall’s mate Pope.
Overall Improvement
There was a time where my mobility was significantly reduced and I had been experiencing increased difficulty breathing. I am less concerned about this now and am much more comfortable day to day.
Amit has been skeptical of light treatment saying there is no real evidence that it will assist but a specialist Dermatologist, Ryan D’Cruz believes it will deliver some benefit and is fully supportive of a trial.
New Drug
My good friend Andy Irvine put me in touch with a contact of his who runs a drug development company in Melbourne – Certa Therapeutics. They are currently trialing a drug worldwide for Skin Fibrosis. Having made contact with the key person, Darren Kelly, I have initiated a series of meetings between Darren and Amit who is assessing the merits of accessing this new ‘ trial’ drug on compassionate grounds. Although this new drug FT011 appears to be a possible solution Amit is cautious and sees it as a ‘last resort’. We will see what happens.
Life on the farm
Things are going well in Tassie and I have enjoyed flying again. I was grounded by CASA rules during June and July due to my increased level of Prednisolone at the time.
COVID is not having an impact in Tassie at this stage, although after most trips to Melbourne for ECP treatment I have to self-isolate at home for two weeks which is a little annoying but not too bad in the scheme of things.
Hopefully there will be no news (being good news) for a number of months….
Bell Jetranger 55 VH-ZVN
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