Paul Lockyer
Posted by

We were looking forward to going on holiday.

Paul Lockyer
Posted by
13 Jan 2016

I was making good progress during the summer months of 2014 & my visits to Marsden were now monthly, however that was about to come to a sudden halt. This is where Chronic Graft versus Host Disease took a hold...

We had booked a holiday for August 2014 at the start of the year so we had something to aim for. Over the last few weeks l had started to feel GREAT ! & as l have mentioned l was even considering a return to work, so the holiday would give me a chance to get ready for this. Fourteen days beach, warm weather, nice food & a drop of wine, there's nothing going to spoil that... About day 7 or 8 l noticed that l was not able to finish my meals completely, my skin was itchy & blotchy & my eyes were irritated... the list goes on & on.
I managed to keep this under control but once home l was admitted to hospital with a fever & reunited with a "Dave & antibiotics", l was soon sorted & told to report to the Marsden. This is where Chronic Graft versus Host Disease took a hold... if there is 100 symptoms then l have had to date 99! Each week l would go to see the Doctor with a different symptom, it has caused problems with my eyes, skin, hair & scalp, joints, muscles, finger nails, mouth & lungs. Even now l still attend SIX hospitals for treatment and monitoring.

All thoughts of a return to work were done for. l was attending the Marsden on a weekly basis for blood tests, followed by endoscopes, x-rays, CT & MRI scans, lung function tests over the coming weeks. These didn't show anything other than symptoms of Graft versus Host Disease.
Mean while l had been suffering with blurred vision & very dry eyes. l had reached 55 yrs young without the need for glasses, however due to GvHD l now had to use them for both long distance & reading. I had my eyes re-tested after approximately six months & my vision had changed again, l now only use glasses for watching TV & driving.

The main things l have been left to deal with are, erratic hair growth, flakey finger nails, shortness of breath, hardening of the skin, aching muscles & joints, & finally cramps. Its a case for now of learning to live/cope with these problems. The doctors prescribed different pills & potions to help keep these in check... 



Paul thank you so much for the update.

It sounds like you've experienced some pretty GvHD! What immunosupressants did they have you on besides cyclosplorin? I do hope that things have picked up since 2014 and that the symptoms are now manageable.

As you know only too well GvHD can be really nasty and we're actually funding a couple of research projects at the moment that are looking to try and combat it which we hope will lead to some more effective treatments in the future.

It sounds like you've adopted a really positive approach and whilst frustrating for you it is good that you are being tested and checked over so thoroughly as some of the symptoms can be serious.

Stay in touch and if you want any further information or support remember that we're only ever an email or phone call away.


Hi Andy funny you should ask about immunosupressants... my father was moaning about "all the tablets" he has to take each day (3 or 4) & l thought would try to list all l have been prescribed since day one in my next blog. I do so many pills l feel like Melman !

I am back on cyclosporin & still on mycophenolate mofitel, each time they try to reduce them l develop something else. I have also recently started taking Imatinib, l am not liking this one very much the side effects are troubling me, nothing overly serious but it can have long term effect on kidney functions apart from other things.  

The time now is 00:57 one of the delights of ECP earlier in the day is feeling tired at 18:00 but still being wide awake after midnight.