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Has anyone else had hair loss with GVHD?

I'm around 7 months post transplant, with relatively mild skin GVHD (ongoing) and gut GVHD (controled after period of weight loss) and have in the past few weeks lost a lot of hair. I'm absolutely gutted and at a real loss of what to do.....its now at the point where I've got a noticeable bald patch on the side which can be covered up, but seeing as I didn't wear a wig while bald I'm terrified of having to resort to it, I'm starting uni in a few weeks.......Help!


  • Oh, Em – sorry to hear about the late hair loss. I had mild skin GvHD for a brief period a few months after my transplant, but by then my hair was growing back and didn't seem to take a hit. Hopefully someone else on here might be able to help better – as a man now with a (what some would say too) full head of hair, I'm unfortunately probably not much use...

    But I did want to say that it's fantastic to hear you're starting uni in a few weeks – that's wonderful news, and I'm sure plenty of hair solutions will arise by the time you start, so don't panic :-D. Huge congratulations, and good luck!

    I remember queueing up to register with my new classmates for my Masters while I was still getting chemo as an outpatient, and everyone was sharing the pictures in their ID – mine had been taken when I was bald and had big bags under my eyes, so I was thrown into a very early explanation of my story. It turned out to be a bit of a relief, though, as I'd been wondering whether/when to bring it up with these new friends I was going to be seeing a lot of over the next year... Fortunately everyone was impressed – maybe they appreciated the story because we were studying Journalism – and it was an early bonding moment!

    All the very best,
  • Hi Emy,

    I also had mild skin GvHD and suffered some hair loss. My hair had grown back, albeit quite thinly following my transplant but I lost most of it again from my body during the GvHD. I didn't lose it in patches, and never lost all my hair completely but I would say its regrowth was reduced.

    I was on steroids (prednisolone) for a long time starting at 60mg per day and reducing fairly quickly once the symptoms reduced. I have been on steroids for a long time though and am still on 1mg per day even 2 and a half years later. I was put on a course of ECP (extracorporeal photophoresis) which seems to have finally got on top of my GvHD.

    In terms of the effect on my hair it was only short term and I think the steroids also helped.

    What treatment are you having and how is the GvHD affetcting you? For me my skin was flaky and itchy, but I found that having a long soak in the bath with E45 bath lotion really helped. I probably spent 2 hours a day in the bath at the height of the condition.

    I think like George says, your fellow students at Uni will be very supportive and possibly more understanding than you might think. It's easy for me to say don't worry as the effects of hair loss for you are probably a lot greater than they were for me, but explain what's going on to those that ask and I'm sure they will be amazed at what you've gone through and support you as you recover.

    All the best,

  • Hi there, I'm eight months post transplant and exactly the same thing has recently happened to me. I have had GvHD ever since I started reducing the ciclosporin, which I have just finished taking completely. At around six months post transplant most of my body hair thinned and fell out though. Very alarming! The hair on my head is growing, but it's very thin and fluffy, a bit like a babies hair. My eyebrows have gone completely and I look like I'm back on chemo again. I have been trying to find out if my body hair will ever grow back again once the GvHD settles down. There's not much info about though to find out. My consultant doesn't seem that fussed about it, but I am. Does anyone know what the long term prospects are for GvHD hair loss?
  • Hi Tania,

    For me the hair loss was short term and everything is back to normal. It was slightly worrying at first as my hair had come back following my chemo then started to go again. With the GvHD it never went completely but did become thin and I lost all the hair on my chest, back, arms and legs where my skin was dry.

    The hair started to come back as the treatment progressed against the GvHD and as it was being overcome the hair returned almost to normal.

    I look at myself now though and at times it is as though my hair grew back differently after the chemo and is a slightly darker colour with a different growth pattern. As I approach 50 later this year I struggle to spot any grey hairs which were just starting to show before I began treatment, so perhaps that's a blessing??

    All the best,

  • Hi Em and Tania,

    I was just wondering whether your hair has grown back? I'm 13 months post transplant and I have been battling severe chronic skin GvHD on and off since February. In May/June when it was at its worst most of my hair fell out (it had grown back very thick and dark after the transplant chemo) and so I shaved my head again. Since then it has grown back patchy and very fine and wispy - it also reminds me of babies' hair. My eyelashes and eyebrows have also come back too although less thick. And to make matters worse in the last month my hair has started to turn white, including my eyebrows and eyelashes. Most of the new growth seems to be white which is worrying as I've read online about GvHD sometimes causing permanent hair loss and loss of hair pigmentation. My nails are also extremely thin at the base and badly ridged, which I don't think is a good sign...

    My skin is pretty good at the moment (touch wood) but I'm still applying steroid creams and steroid scalp ointment and I'm on oral steroids (10mg daily), tacrolimus and MMF, as well as having ECP which has just been reduced from weekly to fortnightly. My scalp can still be a bit itchy although it doesn't look very red anymore, but I guess the GvHD is still a bit active to be making it itch. It seems that whenever the any of the drugs are reduced I have a flare up. I'm hoping that my hair will become thicker and regain its colour when the GvHD eventually goes completely, but I am of course worried that it might not ever come back properly and be white permanently.

    It would be reassuring to hear that your hair has come back (I really hope it has). And if it hasn't yet how are you coping? I've already lost my hair twice with chemo but I was ok with that because I knew it would come back. But with GvHD the uncertainty of whether it will come back or not, and whether it will stay wispy and grey even if it does, is hard to take. It's especially difficult to deal with when you've also got a steroid moon face. Chubby cheeked, balding and greying is not a good look when you are a twenty three year old female!
  • Hi Emma,

    I had hair loss through GvHD despite my hair recovering initially after my transplant. When my hair first came back it was also thicker and darker initially. When it started to thin again with the GvHD it also went a lot finer and lighter.

    I'm pleased to say that once the GvHD had been conquered it returned to normal and is now virtually the same as it was before I became ill. Hopefully yours will recover the same way when you can get on top of the GvHD.

    I was also treated with steroids and had ECP for around 18 months, but it did eventually get rid of it completely and over a year since my last cycle of ECP i have not had any flare ups, despite not taking the precautions I should in the sun.

    Fingers crossed that when you do eventually get on top of the GvHD you will have the same experience as me and everything will return to normal, but in the interim I can imagine how traumatic it is as a young female, compared to me as an older bloke now approaching 50.

    Good luck and please keep us up to date.

  • Thanks Steve that is reassuring. I'm praying that will also be the case with mine. How long did it take to get thick and dark again after the GvHD was conquered?
  • Did you also have damaged nails?
  • Hi Emma,

    the ECP took a long time to get on top of the GvHD but I seem to remember my hair getting thicker long before the treatment finished, so hopefully that will be the case with you too.

    My nails were terrible due to the GvHD and were cracked and ridged and generally very messy. I'd liken the effect to delamination where the top layer peeled along a line across the middle of the nail, from side to side.nit wasn't painful but not a pretty sight and was a nuisance when I caught them doing things like putting my hands in my pockets etc.

    You'll be pleased to hear that my nails are now back to normal though.

    All the best,

  • Yes my nails are also a terrible mess! Really good to know they can also sort themselves out. Also good to know it can start thickening even before you've fully conquered the GvHD. There is hope!
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