6 months post sibling allograft (BMT) I developed acute GVHD.
Initially this affected the skin of my lower legs and back, but despite an increase in my immunosuppression, over the next 6 months the condition went chronic making me quite ill, requiring admission for IV steroids.
I was referred for ECP to “try” and by the time I started at Guy’s Hospital the palms of my hands and the soles of my feet had split, together with my lower legs, looking and feeling like they had permanent sun burn off the worst sort.
I can distinctly remember hobbling from London Bridge station to the unit in the Bermondsey wing; it must have taken me at least15 minutes!
Over the next 3 months of fortnightly ECP my condition stabilised (ie did not get worse) and over the following 3 months slowly, but slowly improved.
Around about this time GVHD dealt it’s trump card; ocular GVHD. But that’s another story!
After a year we reduced the ECP to monthly and another year later quit all immunosuppression (cyclosporin & steroids). That was June 2016.
Since then i have been back on fortnightly ECP for 3 months following a bout of pulmonary GVHD before reducing back to monthly.
Last autumn we tried 6 weekly for 3 months but the GVHD spiked again - so now back monthly. .
In my case GVHD has been a wicked condition.
I liken it to a game of Snakes & Ladders; you think you are nearly at the finish line then you land on a snake (maybe something as simple as a cold virus?) and back down the board you go.
Whilst I have learnt to live with it over the years, there are times when I am thoroughly bored with it.
Another long story from me I am afraid.
But the point is that whilst ECP has for me been a life saver, it is a long job; 4.5 years in my case.
Don’t give up on it, as it the only immunosuppression that does not carry the nasty side effects of long term use of the other drugs.