A touch of chronic Graft versus Host Disease (Part 18)


Just when everything seemed to be falling into place I have had another kick in the teeth.

Yet again it's potentially very serious, possibly untreatable, but if it was anything less than that I am sure you would refuse to read on any further - and quite right too.

Adrian with Graft versus Host Disease

I have a suspected outbreak of chronic Graft versus Host Disease (cGvHD). As you can see from this picture it has attacked my skin leaving it flakier than a flapjack and as sore as salt and vinegar crisps on a mouth ulcer.

So sit back and let me tell you a tale of a red raw epidermis, high dose steroids and the undeniably homoerotic application of baby oil.

It all started about two weeks ago. I noticed my skin was not holding onto its moisture as it once did. To begin with it was nothing serious but, for the first time in my life, I found myself regularly applying moisturisers.

Adrian with Graft v Host Disease

I still have bi-weekly check-ups at the hospital so I reported it to the doctor who has been looking after me.

He said to keep an eye on it but it was probably a side-effect from the Total Body Irradiation and would pass after a couple of months.

Clutching a big pot of E45 cream I returned home happy. Things then slowly began to deteriorate further.

Adrian suffering from Graft v Host Disease

What I did find interesting is the incredible amount of advice so many people seem to be able to dispense in this subject area. I was told about lots of different products, some of which I'd never heard of, and was thoroughly briefed on how to "exfoliate" successfully.

Then the baby oil came into play!

It was the only substance that would stop my skin drying out immediately and although a little inhibited about applying the greasy lubricant all over my naked body, let me tell you, it soon became a not all together unpleasant experience.

Would I go as far to say it made me feel macho? Yes I would.

This was satisfactory for a couple of days but then the problem became really unmanageable. My skin was blossoming in shades of puce and its integrity was rapidly disintegrating. This meant some days my body was unable to regulate its temperature so even though my flat was roasting I felt unbelievably cold.

My eyes started to tighten making it very difficult to see out of until eventually all bits of my skin started to dry up.

Waking up in the mornings was unbearable. The backs of my legs and areas surrounding my shoulders were cracked and to move them was very painful. The only temporary relief I could get was to plunge into a bath filled with an emollient lotion. It was bliss.

Unfortunately, the effects of this bath would only last for about 15-minutes before the whole scaly process would begin in earnest once more.

I think the final straw came at the weekend when I asked Poppy (my girlfriend) to apply some oil to my back and around my shoulders.

Poppy speaks:

"I asked Adrian to lift his arms up so I could moisturise his sides. As he did so, the underside of his arm was stretched from its normal, creased position. Normally, one would expect the skin to stretch out in response to this movement. Adrian's did not. Several large, bleeding cracks appeared in his already sore skin. I'm still cringing."

The next day it was back into hospital and urgent treatment began.

Adrian with Graft versus Host Disease

So what is Graft Versus Host Disease?

I think I mentioned it in an earlier post but it's probably important to re-cap here. The graft refers to the donor cells that have engrafted and replaced my old bone marrow. I am the host. Ever since the transplant I have been on immunosuppressant drugs to stop conflict developing between my new cells and my body.

Bone marrow produces white blood cells which help protect your body against anything that shouldn't be there i.e. anything that it recognises as being foreign. This includes any remaining leukaemic cells which have somehow managed to survive the massive doses of chemotherapy and radiation bombardment.

The key GvHD symptoms you are told to watch out for include:

Skin rash



I developed a rash earlier on in my treatment which responded well to topical steroid creams. Because this happened before 100 days after the date of my transplant this is called acute GvHD.

Any flare-up after 100 days is referred to as being chronic. Because my skin was just drying up and getting redder alarm bells were not initially ringing in my head.

I was about a week away from coming off my immunosuppressants when this outbreak took place. Again dermatologists sliced out a small section of the skin on my arm to confirm whether it is indeed cGvHD and my doctors prescribed a very high dose of steroid tablets.

As my new immune system develops, and the drugs controlling this reaction are reduced, my white blood cells are starting to attack rapidly growing cells in my body. This means my skin is a bit of a target at the moment. But it's also dangerous because your new defences can start to attack your liver. Thankfully, tests show my liver is still functioning well at this stage.

My new treatment is two-fold.

1.Increase the dose of the regular immunosuppressant drugs.

2.The steroids come in and stop the new white blood cells, from my newly engrafted bone marrow, from working as 'well' as they are.

Thankfully I seem to be responding. The change in my skin, within 24 hours, has been incredible. No more problems have surfaced yet so I have to be optimistic that this situation can be contained. Some people are not so fortunate and the condition can run away from them becoming incurable.

I am grateful to have seen such a change in such a short space in time, but as you know I was so close to getting back to normal life - and work. I'm annoyed and frustrated that this latest problem will delay matters further.

Sometimes it seems like it's never going to end.


Hi AD, oh my god. I'm glad the baby oil had some use but I think that maybe we shouldn't set up our beauty tip column just yet! I hope that its settling down and feeling more comfortable in the very near future and your bathing ritual in the mornings can shorten soon!

Em xx

Hi Adrian

Liz here.You must be sick of hearing from me!I`m sure the treatment will kick in and sort you out. The steroids will make you really happy!! Is it cyclosporin you`re on?

Just keep positive and I`m sure things will work out.

We`ve just been down the pub and now are watching French & Saunders - very good for a laugh. Then Mike ( my husband ) is taking me to the Alex tomorrow - first match of the season we`ve been to -perhaps they`ll manage a win!

What are Forest up to? Mike says they`ve picked up lately after a bad start.

Take Care, Adrian - it`s always good to hear about you - good or bad.

Good Wishes to Everyone


Hi Adrian, sorry to hear about your GVHD. Chin up, it will soon be sorted and then you can go back to work! Hope you feel better soon. Love Dawn xxx

Hi Adrian!

Thanks for your comment on my blog, but hey, whats with the delay on your updates on your blog? How are you doing? We needed that info yesterday already! Still flakey? Seriously though, I hope you manage to get rid of that gvh really soon -it does not sound like much fun at all :-(

Being in contact with your mom/mum (I grew up with a British dad and South African mom, sooo who knows which is right.lol) has been fantastic for me too... Also reading about your feelings in coping with this disease has given me more insight into how Steven must feel at times even though the situations are very different.

Steven also does not like to talk too much about his cml, but he and his friends do give each other a rough time of it sometimes, much teasing and caring going on there. I will pass on to him that he can contact you - I appreciate that tremendously.

Keep your spirits up Adrian - it will end sometime, you are too determined for it not to. Besides, if you don't, us mom's will gang up on you and that you dont want! :-)

I look forward to hearing that you are whipping this gvh as well - soon.

love and light


Steven's mom/mum

Hi Adrian,

I've only just seen your blog following the reports of your award in the papers. I was diagnosed with Acute Myloid Leukaemia in July last year. I spent 10 weeks in Lincoln County having the standard chemo which was unsuccessful and had a bone marrow transplant at Nottingham City Hospital in December. So far I am clear of the desease, but I have a similar problem as you with GvHD. I had a period of acute GvHD back in February (which was as itchy as hell). This was cleared up with steroids over a few weeks. The chronic GvHD kicked in around May time and is now slowly easing. My GvHD has affected the skin and I have had similar problems with flaking skin(I didn't know I had so much skin I could lose), soreness, cracking skin and turning bright red. I was told to protect myself from the sun as this could make the GvHD worse. (Long sleeved shirts, hats and factor 50 sun cream were standard on the few nice summer days). I have also had the problem of feeling cold all the time with the only place to get warm being in the bath with loads of Oilatum. It will improve and there are other treatments and medications which can be tried. With the emolients, I started with E45 and have progressed to Diprobase and I am now using Epaderm (which is a bit like soft dripping but works well, especially on the cracked skin). I am also receiving Photopherisis every 2 weeks which is having an effect.

The GvHD will ease over time and with the treatments. It will all come to an end and things will get back to normal (so my wife keeps telling me)


Hi Dave,

Thanks very much for dropping me a line. The steroids have helped but I know they are just holding the reaction at bay. It looks like I'm going to start with photophoresis this week.

What is it like and is it making a difference?

Best wishes,


Hi Adrian

Congratulations on the award - well deserved!!Sounds like you had a great night and I love the photos.

Glad to hear the steroids are helping with the GvHD and hopefully it won`t be too long before it`s under control.The treatment for leukaemia is so varied for every patient and it`s interesting to hear about the photophoresis as I`ve never heard of it - like you I`m keen to know more.

You look so well and happy in the awards blog - keep it up.

Love to you and you family


Hi Adrian,

I've been having photopheresis for a few weeks now and my 5th treatment starts tommorrow. I have treatment every 2 weeks with one treatment consisting of two sessions, one on Wednesday afternoon and the second on Thursday morning.

The treatment is fine, you are connected to the machine via a needle in the arm and you just sit or lay there for around 3 hours while the machine does its thing. The machine is not portable, so once you are connected you cannot move around. I take some reading material to pass the time.

I assume that the hospital have explained how photopheresis works(Treating the T cells with u.v.light). It may be worth having a look at the machine manufacturers web site for a bit more information. The web site talks about T cell lymphoma, but the treatment for chronic GvHD appears to be the same. The web site is www.therakos.com .

I have found that photopheresis does work. There was little change after the first two treatments but I have noticed big improvements between the last treatments. My skin is loosing its redness and for the first time in weeks I have patches of normal looking skin. The skin flaking has also reduced.

I was advised to wear u.v. screened sun glasses indoors and outdoors for 48hrs after treatment and to put on strong suncream as you become sensitive to u.v light. I feel a right prat wearing sun glasses inside on a cloudy day and my colleagues at work take the **** unmercifully, but it's got to be worth it.


Hi Adrian,

Just wanted to say a huge 'THANKYOU' for responding to everyones comments. Such a lovely thing to do. I was so happy to read your reply that i made all the family read it too!:) Mum in-particular and she says 'thankyou' also! I felt privelaged as though it had come from a celebrity!! Saying that....i think you are worthy of that status because you are a wonderful person whom everyone should know of! The fact that you have won a 'National Award' (WELL DONE!!!!) shows how great your blogs have been to share with so many people who are wanting to support you in every way possible.

Im sorry to hear of your latest set back and i only hope and pray that you return back to good health very soon. Its been a long journey for one person to travel and you must feel so annoyed of this additional problem. Lets stay positive and look ahead to normality, no more lonely days and your life being lived your way.

I'll most certainly keep updated with your progress. Your parents have been blessed with one of lifes *angels* as has Poppy. From today and always may the best things in life be yours.

Much love,
Natalie, 23(Preston) X

Cheers for such a nice comment Natalie.

As far as my celebrity-status goes I was recognised in a pub yesterday. My dad was very jealous. Unfortunately I think I've got a long way to go until I reach Z-list Big Brother housemate levels!

I could not agree with you more when you talk about normality. That's all I want to do too- it seems like you should be out partying or skydiving or something, but it's not like that is it?

Really appreciate you getting in touch. Best wishes to you and your family as well.


I've just seen your blog for the first time, after Maggie ward sister at rotherham told me about it yesterday. We spoke briefly when you came down to have a look round the unit. I was the good looking one hooked to the machine, mind you there was only me and nurse Helen there at the time! Only kidding Helen!!! Glad your treatment is going well and always stay positive and keep smiling it helps. Congratulation on your award something good as come out of you been ill I suppose!


Hi Adrain,

I was on line searching for ways to get rid of itchy skin do to GVHD and I came across your Blog.

I am a CML survivor. I had a transplant on March 31,1998. Since the transplant I have had many minor setbacks to my treatment. Looking from my point of view I can say you have to just keep rolling with the treatments. Finally in 2004 I got off all medication. Now nine years out I have been left with thinner bones, joints that don't move, feet that drop, everything that is supposed to stretch doesn't.
I mean everthing. Before you get sick you don't realize how flexible your body should be.

So enough for the bad news. I want to say although the process has been hell, I now live better then ever before. So they got a piece of my physical being. My mind and spirit has been greatly improved. If I could just stop the itches on my back I will be complete.

The other thing I got from my medical roller coaster has been a list of doctors that I owe my life to. I didn't see it as they poked, proded, cut, scrapped and medicated me. I see it now how lucky I have been.

Hang in there. It gets alot better. It just might not be on the time clock you would like.


hi Adrian.It's a long way to go through, by i always hope that someone, someday,will be able to define clearly the steps to project a personalized program of photopheresis for every single patients.I'm an italian nurse and my husband had ALL, BMT and since 7 years "we" are affected by cGVHD.I get my laurea with a study on Educational project for people affected by cGVHD and treated with conventional therapies and photopheresis.This work implied a deep analysis of the known mechanism of action of Photopheresis.If anybody is interested or has some news,can contact me by e.mailing me at giorgia-v@hotmail.it HOLD ON!!!!

hi my daughter had a multi viseral transplant(5 organs) in Dec07. in Jan diaginosed with GVHD. ran high temps, face red like sunburned, and on her back the skin looked different. has been putting hydrocortisone cream on 2 times a day. released out of hospital feb, put has been admitted again . her white cell count is very low. .06. they keep giving her granulocytes and platelets. now she started breaking out with these little red dots on her feet, legs and hands. it looked like it was under the skin and now they have gotten bigger and are above the skin and looks like they are drying up. the doctor called them lesions. have you had an experience with this and will be go away. the doctors seem to think when her white cell goes up they will disappear. hope someone knows exactly what i am talking about. she is 27. thanks

Thanks for sharing. I am contemplating a BMT due to Myelofibrosis and was searching for info on Graft vs Host disease. You descriptions and pics have given me a clear idea. Hope that you are doing well now. Any advice? Kathy

thanx for posting this.......i have been dealing with a similar skin thing for a few months, on my face.....tried everything, finally had a biopsy on my face.....i am over 200 days post bmt......my sister was the donor.....

does gvh cause permanent damage? is your skin ok now??


I'm sorry that this is happening to you, but happy to hear the treatment is working. Hope everything turns out OK.

Well, I can't say much of comfort to you, Adrian, but it must have been an awful ordeal, and you're probably sick of people saying, 'I hope you feel better soon' and as you said, giving you advice. I have none to give, but I hope it doesn't go on too long for you - endurance is a very hard thing.

I had an itchy skin thing once and it drove me balmy for several weeks - I was soooo sick of it!!!

Tamara :-) (Australia)

Dear Adrians family and friends

I am most sorry for not reading the initial paragraph when I read this site and so my comments in here were in ignorance of his death. Please forgive me for this. It must have been an awfully hard time for you all and I hope it has brought something good with all the bad.

Take care

Tamara (Australia)

get rid of your crustys.

Good luck. Thanks for taking a big one for everybody! Love you.

Had the same exact results as you from a transplant. How are things going?

About this Entry

This page contains a single entry by Adrian Sudbury published on October 4, 2007 10:19 PM.

Replies to readers was the previous entry in this blog.

Baldy's Blog scoops national award! is the next entry in this blog.

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