The ups and downs of Sclerodermatous skin GVHD

It’s been almost six months since my last blog and there have been a few developments……unfortunately not for the better.

Back in January I was concerned that my skin condition had regressed due to GVHD and it has become obvious over the last few months that the ugly condition has flared up again.

My new immune system is attacking my skin resulting in fibrosis between the dermis and epidermis layer. It looks a lot like cellulitis but is actually hard and stiff and it results in a slow loss of mobility as the skin thickens and becomes less elastic.

The standard way of dealing with it is to increase the steroid, Prednisolone, which is a very ‘blunt’ instrument widely used for a range of conditions. My hematologist, Amit Khot, pushed the dose up from 10Mg to 25Mg hoping to slow down the spread. I’m also on a new drug, Ruxolitinib (Jakavi), which can take up to 6 months to take effect, I’m only two months along this journey – so more time to wait.

Unfortunately there isn’t a blood test to determine if this type of GVHD has flared up or is under control, it is only assessed via clinical presentation. It changes very slowly and is extremely difficult to detect. It’s like being a frog in boiling water, it can progress undetected for months until the situation gets out of hand – and unfortunately it is not reversible using conventional methods.

In an effort to seek alternative solutions to reverse the damage I have investigated a range of treatments including light therapy. I have tried Red Light Therapy (wave length of (615-630nm) and although there is definitely a short term positive result it is unclear as to the long term benefits.

Amit continually says ‘ there is no evidence’ to support such treatments my view is I should ‘chase every rabbit down every burrow’ as you never know what you might find. In fact my research has uncovered a number of new drug trials that are focused on reducing fibrosis in organs including skin so hopefully in time something will eventuate that might provide a solution.

However my Dermatologist Ryan D’Cruz believes other forms of light therapy may be effective and he supports a trial of UVA1 (340-400nm).

The issue is to try and determine whether the change of drugs or other treatments are delivering results – especially difficult when these are being delivered concurrently.

I have recently tried Red Light Therapy with limited success

Although it sounds rather grim my recent action and searching for solutions is more to avoid significant regression of the disease (and perhaps improve the situation) rather than simply accept a degeneration that will eventually lead to loss of mobility.

Apart from some annoying side effects of Prednisolone (lack of sleep, odema, cramping, peripheral neurophy) things are going reasonably well and I am still able to do most things that are on my daily list (with the exception of flying).

One thing that all doctors agree on is physical therapy such as stretching can only help. It is now very much part of my routine to stretch for 45mins most mornings.

We have been based back in Tassie for some time now, returning to Melbourne for treatment as required.

During the last few months we have had some great visits from old friends, including my school mates Peter Taylor & friend Katrina from Sydney and Ian & Christine Poole from Brisbane.

And most recently Stephen & Katrina Weir together with Lisa & Simon McSweeney from Sydney – just in time before the Sydney COVID situation got out of control!

Ken and Helen Lansdowne from Wagga visited for a few days on their recent Tasmanian travels. Ken and I played in the Wagga Highland Pipe band for many years. He has been a great supporter of mine during my extended illness.

And my Ward 7B buddy James Watson with his wife Victoria visited as well.

We visited Jan’s parents in Bairnsdale. They have recently moved off their farm into a new house in town.