We'd love to hear your ideas - Top Tips

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• kw13

  June 2015

  Tiredness: take your time. Try and realize that it will take a while to get back to normal. Start to think about what a new normal might look like. Use your friends and family - can they do getting the ingredients (for example) and then you can still do the cooking? Have honest and open conversations over time about what your role in your family is and what you can still do, will do some other time, or perhaps might be better handled by someone else. Take it slowly. Attend follow-ups with your clinicians - take notes with you (and notes from your family). On this latter point, I would make a list of things that I had noticed or was concerned about and give this to my husband (who had a transplant just over 2 years ago and has occasionally had mild GvHD) - and these could range from the ridiculous (was it OK to let the mother in law's dog in the house [nothing is too silly to worry about!]? to the more sensible (was this rash because my husband had failed to put suntan lotion on properly?). On this latter point - you can never put too much suntan lotion on! Use other facilities -we have a Maggie's Centre nearby - it took me the best part of 18 months to get my husband through the door, but he loved it when he did (and did a great yoga class there and had some great conversations with trained people in confidence); and possibly most important, without me and not in a clinical environment. It can take ages for things to settle down and the impacts on your wider family and friends will be felt for ages - but there is a new life out there!

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• Billie_AnthonyNolan

  June 2015

  Hello kw13,
  
  Thank you so much for your thoughtful response. It sounds like supporting your husband has given you great insight into managing and coping.
  
  I especially like the point about nothing being too silly to ask about if its causing you worry! Great advice.
  
  Glad your husband got a lot from visiting the Maggie's Centre too.

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• Dieseldrinker62

  June 2015

  I had skin GvHD and have just about conquered it just over 2 years since it first showed.
  
  Thankfully for me it wasn't so sever that my skin tightened around my joints and affected my mobility, but my skin did become very dry, flaky, and extremely itchy.
  
  I guess my best tip would be to moisturise as much as you can. Try different products and find something that works for you and relieves the symptoms in your case. I tried Diprobase but didn't like the smell, then my doctor prescribed 50/50 emollient (liquid paraffin) but I felt like a greasy chip with that on. I found Zerobase was good and had similar moisturising qualities to Diprobase without the smell. Bathing in E45 bath lotion gave me a lot of relief and my skin felt smooth and less itchy afterwards. For a long period I was bathing for 2 hours a day, every day in the stuff.
  
  Take great care with your feet. My feet got very tender after a day of working outside doing some fairly heavy work, to the extent that the skin was peeling and bleeding. It took weeks for them to heal afterwards. My fingernails were also badly affected at one stage and looked like they'd cracked halfway across the nail bed. I used a clear nail strengthening varnish that my wife had to try and give them some strength by 'gluing' them together and reduce the risk of catching them on clothing.
  
  I've had various steroid creams as well as oral steroids. The oral steroids were initially at a very high dose (60mg of Prednisolone) and I had great difficulty sleeping. I've now been on them for just over 2 years but they have been slowly weaning me off them and I'm on just 2mg per day.
  
  The steroid creams varied in success but similar to the moisturising creams it may be worth trying different ones. I had difficulty at one time getting hold of one type (Eumovate) that had been prescribed, so had my GP prescribe an alternative (Betamethasone Valerate) and found that to be much more effective. With the Eumovate there were two type, a cream and an ointment - I found the latter to be very greasy and my skin didn't absorb it, so I found the cream much better.
  
  I think what finally got on top of my GvHD was ECP (Extra Corporeal Photophoresis) which I've been having for around 2 years and am close to having my final session in a few weeks time. Initially this was being carried out fortnightly but has reduced in frequency as my situation has improved. It involves being connected to a machine which extracts your blood and centrifuges it to separate the cells it needs and returns the other cells to your body. The process treats around 1.5 litres of blood before it has collected enough cells to treat, which are then mixed with a special chemical and exposed to UV light before being returned to your body. I liken the process to dialysis and it takes around 2 hours for two consecutive days each cycle. I don't understand the science behind it but understand that it 'reprogrammes' the cells that are causing the GvHD.
  
  In terms of monitoring yourself, keep an eye on your skin and let your doctors know if anything changes or you notice anything out of the ordinary. Really take your skin health seriously and protect it, particularly from sunlight as this can cause the GvHD to flare up, so use a high factor sunblock. Protect your eyes from bight sunlight too as they can be affected.
  
  I haven't suffered elsewhere with GvHD so can't comment on other areas that it can affect but it goes without saying that if you feel something that doesn't seem right, make sure you tell your doctor.
  
  Finally, don't be disheartened if things flare up. I've seen numerous people being discharged from the ECP treatment I've been having, so GvHD can be treated, and hopefully mine has subsided after all this time and my treatment will finally end.
  
  All the best,
  
  Steve

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