Treating chronic Graft versus Host Disease with photopheresis (Part 21)


I think seeing Extracorporeal Photopheresis (ECP) makes it much easier to understand. I really hope this video is useful to anyone else who may need this treatment in the future - check out the big needle too!

The point of this treatment is to cure my chronic Graft versus Host Disease (cGvHD). I have around a 50% chance of it working - but I remain worried.

PS. It's been really hard convincing people that this condition is actually pretty serious!

I was back in the Sheffield hospital today for a check-up and to monitor the steroid treatment.

If you remember it's the steroids that are stopping my new immune system from attacking me at the moment. The idea is that ECP 'trains' my immune system to be more tolerant.

I was on a huge dose of a steroid called Prednisolone. To begin with it was 165mg a day. Today it has been reduced to 75mg. I'm still OK but already there are very slight areas of dry/red skin appearing. It's only very subtle but it's enough to trouble me.

As you've probably gathered the last month or so has actually been great fun. I've had some great times - that I have appreciated every second of - won awards, been out with friends, and despite a massive face and rather odd head hair, I have made the best of it.

I have also started working from home around my treatment.

The steroids have made me feel lots better and after the last year I can't tell you how good it's been being able to drink and eat like I used to. I also feel that you owe it to those who haven't been as lucky as I have to make the best of the good times you are given.

But I've always known that if the ECP doesn't work there is going to be a crunch time probably early in December.

Staying on steroids is not an option. They are stopping your immune system from working so you are at a high-risk of infection. They can also do crazy things to your body and mind.

Living with cGvHD long-term can be pretty unpleasant too. Symptoms can range from a bit of dry skin to your joints seizing up reducing your mobility. It can also spread to other parts of the body, like the mouth, making life very uncomfortable. It can affect vital organs too causing death - I'm so tired/bored of death!

Some very kind people have been in touch with the blog and let me know about their experiences. Clare let me know about a GVHD mailing list at I have had a quick look today and I think it will be really useful.

I have always believed I am going to survive this episode. I have much less confidence in my quality of life being restored to normal.


Well hello there, young man! Another great video, as ever - you are so clear in your explanations, and the team helping you (both journos and medical) seem so professional as well.
It was great to see you this weekend for possibly the earliest Christmas in the world - I did appreciate you all making the journey up to the frozen north, and we had a good time, hey? Little bit of Dodgeball, little bit of frisbee, little bit of mountain biking - what could be better?! Glad you got back safely and are working your way through your next list of appointments - busy chap nowadays! See you soon, I hope. Lots of love to you and Pops, Helen.

Hi Adrian,

How soon will you know if the ECP is working? Have added you to the prayer list at our little village chapel.

Do you ever get sick of people sticking needles in you? I'm not squeamish at all but would love not to rememble a pin cushion. Veins collapsed with all the chemo and bloods - guess you have the same. Bloods today and see consultant Thurs for an update.

Glad to hear you're able to do some work from home - the money worry is always there, isn't it?

Thoughts and prayers are with you for your treatment.

You WILL survive GVH Adrian, Phil has done, it has taken six months but his Pred is now down to 5mg every other day, no anti-rejection drugs, just a bit of antisick he is a lot older than you, just keep positive only the positive survive this and I know it's hard but it's something that has become very obvious in our experience just hold on in there and keep smiling. Phil is looking forward to coming home in the next 2-3 weeks where we will work on getting him back to fighting weight and to celebrating the 1st aniversary of the transplant in January.
And Phil didn't even win an award!!!!


Helen - Indeed it was an excellent Christmas. Thanks so much for such a brilliant time.

Jill- I find the good will of people making gestures like that absolutely incredible. Thanks you, it is really appreciated and means a lot.

We will only know when the ECP is working if we continue to taper down the steroid drugs and nothing happens. I sincerely hope this is the case. But I can see already my skin is a bit drier in places. Nothing serious yet but the 'roids' are still at quite a high dose.

Like I said in the post I'm just going to make the most of the next couple of weeks and see what happens.

Pin cushion springs to mind! My veins are OK thankfully but I don't think I will ever be fine with needles!

Very best wishes to you too.

Trish - Great to hear from you again. Poor Phil - sounds like hard work this GvHD business! Please pass on my best wishes to him and I hope he can be out and enjoy Christmas with you and your family.

I agree with the power of keeping positive.

Hi Ad,

It was so good to have you up this weekend with the rest of the giblet massive.

You never fail to amaze me with you mental strength to get through. I hope you know inside how strong you are and can use this to push through to the other side.

I believe that you will beat the GvHD, just keep sight of the 5 'Ds'.


Hi Sugar,

So I am finally pursuaded by my husband to leave you a post (on my one month married anniversary no less!) its sad to hear you a little bit down so I am reminding you that we all, and I mean WE ALL in a big way, have the upmost faith in you and your recovery. You have gotten over so much already that I know any problem that you face you can overcome. Here's to 'blossoming relationships' and the continuation of lasting family bonds.

Thinking of you and Poppy always,
x x x x x x

Hi there
hope the GVH is ok. I have now had 23 bone morrow test so no how you are feeling the test is quite simple and its not the going in its the coming out I found differet to any other test. I went to a CML conferance last weekend in Scotland very interesting and reserch promising. I am also under Sheffield RHH in Dec. we are having a fund raising night for P3 and the isolation rooms will benifit we would love you to come along it is in Sheffield on Sat. 8th Dec.
Hope you are feeling well
best wishes
Kath Rhodes

I hope your ECP is going well. The video is very interesting and informative for me. I am now 1.5 years post-transplant and still dealing with chronic skin gvh and on 20 mg prednisone daily. We are considering ECP or PUVA to try to get off the steroids so I'm looking for any hope and success stories I can find.

Hi Ad,

It's a long, long time ago since I last saw you all those years ago during our school days and it is with a certain sense of regret that only this - your news breaking story of bravery, courage and hope would ensure that I once again speak to you. I'd like to start by thanking you for highlighting to me just how easy it is for us all to become solely focused on our own issues in life no matter the scale, without taking the time to consider the problems others are facing. Sometimes a family member, sometimes a stranger in a foreign country and as in our case a distant schoolyard peers. It's not the story which is inspiring to me AD because that, as you've already rightly pointed out is a shining example of just how precious life is, however you're whole attitude, personal qualities and strength as a man, to try in your hour of need to turn this situation around and create something which will in the end help so many other people is Sir, something incredibly inspiring and will stay with me.

I sincerely hope that you find some comfort in knowing that what you have done HAS MADE A DIFFERENCE and will I am sure continue to do so in years to come. I will certainly support your campaign and properly investigate this procedure and endeavour to better understand and overcome my ignorance on the matter, with the hope that this will ensure that I am doing my part towards helping in any way that I can towards a better future.

My Best Regards
Gareth Bartlett

Where can one get treatments in Oklshoms


About this Entry

This page contains a single entry by Liam McNeilis published on November 19, 2007 1:17 PM.

See Super Steve Harrison pick up the award. (Does the guy think Steve's Baldy?) was the previous entry in this blog.

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