Hello!

It looks like you're new here. If you want to get involved, click one of these buttons!

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

Night time itching post transplant

My son is 15 months post BMT and is really struggling with itchiness which only seems to flare at night time.
Although he’s had gut and skin GVH during recovery I’ve been told as his skin is not showing signs it’s unlikely to be GVH at this point.
Antihistamines or Hydroxyzine are not helping. He describes it as itching but sometimes says it feels like burning or biting.
Really keen to hear if anyone has experienced anything similar and how it resolved?

Comments

  • Hi Hanna, I’m sorry to hear your son is struggling. It sounds unusual that this only seems to flare up at night. Has anything changed, such as bedding or clothing that he wears to bed? Is his skin dry or showing any rash at all?

    I had skin GVHD during my recovery and found sleeping really difficult. I found that having a bath each night with E45 bath oil in it helped soothe my skin and gave me some temporary relief. It stopped my skin itching and gave me enough comfort to be able to get to sleep though I’d still wake up itchy again in the morning when the effectiveness had worn off.

    I guess it’s a case of monitoring it and making sure his transplant team are kept up to date. Hopefully it will wear off or can be treated somehow.

    All the best,

    Steve

    Hannachelle_16Clare_AtAnthonyNolan
  • Thank you Steve. Nothing has been changed and no sign of anything on his skin. Dermatology say it’s not to do with skin 🤷🏻‍♀️ I’m starting to wonder if it’s nerve related? Will be on the phone to his team in the morning again!

  • edited January 18

    Hi Hanna

    I empathies with your son and i understand how uncomfortable it can be at night.

    I experienced intense itching in thr day and a lot at night. After alot of trial and error i discovered that my skin was infact affected by GVHD but without a rash. I was told it was extremely dry.

    One of 2 things that helped was using Dermol cream which can be used in the shower to help prevent dehydrating the skin which intensifies itching as you dry off. I then used a combination of Dermol once dry and topical steroid creams including Betnovate which i got from the medical team. I also used a combination of antihistamines.

    I found relief from keeping my bedroom really cool and having windows open as heat can irritate it. I use a fan even now most nights despite it being cold.

    For really intense patches of itchyness i used a cold compress to calm it down.

    Maybe you can seek some different lotions. Freuqent use throughout the day may help. There are some lotions that have i gredients that benefit itching like menthol.

    If it is nerve related your medical team maybe able to suggest an appropriate nerve pain medication that could provide some relief. Definately worth exploring all options.

    I hope he finds some relief soon.

    Michelle

    Clare_AtAnthonyNolan
  • Thank you Michelle.
    His team dismiss it being GVHD as he has no rash 🤷🏻‍♀️
    It definitely helps to keep things cool, we also have windows open all the time and if he gets uncomfortable during the day he goes outside to try and cool off. The dermatology team have said he has dermographism although he has no rashes, just itching but it can be triggered by a lot of factors such as friction (even from applying moisturiser) or changes in temperature. Being too cold or hot definitely triggers him as well as having wet skin so bathing is out of the question at the moment (nightmare!). We’ve been prescribed a different antihistamine but it’s still making no difference. We were prescribed a moisturiser containing menthol but he said it made him feel worse and he can’t stand anything on his skin now.
    We did have skin GVHD last year and went through several weeks of rashes then later on it seemed to return as extremely dry and we were applying Betnovate and then Tacrolimus cream when that didn’t clear. The itching has continued throughout.
    All his bloods are normal so his team aren’t majorly concerned but that doesn’t really help. He was diagnosed with hypothyroidism last year and they did adjust his thyroxine dose recently so I often think there could be a connection but his endocrine team have also been dismissive of that being the cause😟
    I’m waiting for an update today as to what we can try next. It worries me that this doesn’t seem to be a regular post BMT effect and so it seems unknown as to how to treat or how long it will last (is it even permanent).
    Thank you for sharing your experience and what has helped you, it’s much appreciated 🙂

  • I meant to ask Michelle how was your GVH diagnosed? I’ve heard you can just have itch without the rash but his team aren’t even considering this at all

  • Hi Hanna

    My GVHD was unusual as i experienced from quite early on. My team didn't diagnose it to begin with as I was on a opioid at the time that caused unrelenting itching too. So it become a process of elimination. Which sounds very much like what your son is going through?

    I had been experiencing dry skin but only face and hands. As where the itching was all over.

    Once i was off the opioid and the itching continued with no rash i was told i had developed sensitivies. However as it was long standing and i had eleimnated any possible causes they treated it as skin GVHD and the treatment helped. Mild steroid for 2 weeks and tones of different steroid creams.

    I had to reduce the amount i showered because they definitrly aggrivated things. I was showering in the evenings as well so when i changed my routine involving strip wqshes instrad of showers it altered the intensity at night.

    I understanding how your son expereinces difficulty even with putting creams on.

    I hope you get some helpful next steps today.

    Best,

    Michelle

  • Thank you so much. Yes we had to switch to morning washes for the same reason.
    When I tried putting Eumovate on his back (which seems the worst area) it didn’t make any difference but as you say sometimes it’s trial and error with what works.
    I’m going to ask again about a course of steroids as they’ve been reluctant to consider this I believe due to the immune suppression but as we’re shielding I think the potential benefits outweigh the risks in short term
    Keeping everything crossed we get some relief soon 🤞🏼
    Hope you are doing well

  • Aveeno cream is good I use.this most days.

    chelle_16
  • @Laulau1 thank you. We have used Aveeno on and off but he can’t tolerate anything on his skin now as it increases itchiness

Sign In or Register to comment.