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!
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).
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.
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.
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….
9 thoughts on “Good news – Treatment is working”
Great news. Tim
Hi there Geoff – I’m so pleased you are back in the air and that your mobility is improving! Sparky and Jan both look gorgeous and happy as well! Thanks so much for giving us updates – we think of you often, and in my new role as Wagga Anglican Preschool’s Manager I use quite a few ‘Jan and Geoff’-isms quite regularly!! Much love to Jan and yourself x Jodie
Hi Geoff ( and Jan)
sending love and thinking of you both 💕 c and j xx
Hammo hope things keep improving for you
Boy PRD at Bomen just keeps growing every time I pass
Such good news – thanks for keeping us posted. go you good thing!
All is well in Tumbarumba.
Lots of love to you both
Hoody and Geoff XO
It is great to hear good news during these times!! thank you for sharing. Love to you and Jan!
Robin and Matt xx
That’s great news! I constantly admire your positivity through adversity.
Great news and so pleasing to see you holding up so well. Enjoy that flying again!
Chris and Lib
You are beacon of light and hope.
Amazing man , stick with it.