Possible Skin GVHD?

General advice
1

I have been suffering with itchy skin for about 2 months now. It started underneath my armpits and my doctor said it was ezcema. I never felt like my skin was dry though. Just slightly pink and itchy.

Now it is all over my stomach in patches, again the skin isn’t dry it just looks like patches of slightly raised pink blotches.

Please could anybody share how skin gvhd looked like for them in the early stages / how they manage flare ups?

I have been really lucky having absolutely no issues since transplant and I’m just starting to come off my Tacrolimus (had bad side effects from ciclosplorin)

I really really really don’t fancy having to take steroids again and really want to catch it early if possible :frowning:

I will speak to my nurse on Monday but I think I will just be really paranoid until then!

Any help would be amazing and I hope everyone is okay :slight_smile:

2

For reference I am 270 days since transplant and a 22 year old female ?

3

Hello Lucyh1234

I am Michelle one of the Online Community Champions and a fellow SCT recipient.

Sorry to hear of your skin challenges this last 2 months. Skin GvHD can look different from patient to patient. Some more severe than others. It is surprising how skin dryness can present. It is not always a visible red scaly area.

I know there are a fair few of us that can offer some insight, experience and tips.

I had my SCT in 2019 and presented with skin GvHD immediately with acute itchiness all over my body. I was unaware that was what it was at the time. The drs where treating me with antihistamines, various topical steroid creams and body lotions that could be used in the shower and again after. Was abit of a mess with clothing. But it soothed the irritability.

Once i was discharged home it had settled but then at 10 months post SCT it flared again, but more aggressively, looking as though you describe, raised pink blotches, like an allergy. I was tappering off cyclosporin at the time and it was often the trigger for a flare up, in my case. And can be a common experience.

So i did the yo-yo, up and down of cyclosporin to control it. I am now 8 months off cyclosporin and experience skin GvHD from time to time but i am able to self manage.

Steroids are not always necessary if there are other ways to manage it. Discuss the possibility of skin Gvhd with your nurse. I am more than certain they will be able to offer a variety of lotion combinations. There are many very effective ones that sooth the irritablity and treat it.

At its worst my triggers where heat, showers, bed sheets, tight clothes and medication changes. I found anthistamines helpful as well as keeping as cool as possible. With fans at night, light sheets on the bed, windows open for a cooler bedroom enivronment, ice packs at its worse, even try a pet cool mat. I know sounds bizzare but it works! (For me at least)?

Now i have established a good lotion routine and can forsee a flare. Enquire about a prescribed body lotion that can be used in the shower. I found that it prevented my skin drying out in the shower. Which sounds counterintuitive for a shower ?

Let us know how you get on.

Is there any particular trigger for yourself that you have identified.? I would say one variable is your tappering of Tacrolimus. Which skin Gvhd can be common as well.

Best,
Michelle

4

Hi Lucy,

Thanks for your post. I’m Tom from the Patient Services team at Anthony Nolan.

I’m sorry to hear you’re experiencing discomfort & are concerned you may have skin GvHD.

As with anything we suspect may be GvHD, it’s recommended to have it checked straight away. This will enable your team to identify any problem and to start treating it as soon as possible. You’ll be pleased to hear that most GvHD is treatable if spotted early - we have more info here: Graft versus host disease (GvHD) | Anthony Nolan

So it’s good to hear you’ll be checking with your nurse today. Please let us know how that goes.

All the best,

Tom

5

Hi Lucy,

Like Michelle I’m one of the Online Community Champions and like her I also suffered from skin GvHD after my transplant. As Michelle says it can present itself differently in different patients, so as Tom has suggested it’s best to speak to your medical team and let them check it out. Did you manage to speak to them today as you’d mentioned?

If it does prove to be GvHD there are various treatments depending on the severity and your medical team will decide how to proceed in your case. Like Michelle I went through a course of treatment for my GVHD which slowed down the rate I was able to come off immunosuppression, which in my case was Ciclosporin. My GvHD was treated successfully though and hasn’t returned since treatment finished.

Please let us know how you get on and the outcome of your discussions with your medical team. There may be others who have similar concerns and it’s useful to understand each other’s experiences.

Best wishes,

Steve.

6

Hi

Im year past transplant in 2 days Like Michelle and Steve I have suffered with and still do with gvhd and I did get little of skin discolouration near my tummy. Very minor.

Straightaway I was onto my specialist nurse as it is individual. Anything I worried about I would send photo to my specialist nurse. I found this really helpful as my hospital is far away.

I have managed this with immunosuppressants but tapering off them. I now can recognise flare-ups I use my recommended steroid cream and neutral body cream 10 mins after. It usually goes within 24 to 48 hours. Your doctor should be able to offer a cream to soothe the itching.

I also just try to cover up as much as possible it seems to help prevent rash flareups and wear factor 50 kids sensitive sun cream.

I always stick to fragrance free products to avoid irritating my skin ie sanex zero.ive found aveeno very moisturising for dry skin I had to use it everyday at first now it’s lot less frequent. Take care your doing great ?

7

Hi Guys

thank you all sooo much for your comments!

I have spoke a few times back and forth with my nurse and she always sends the pictures onto my doctor, so far I have had hydrocortisone cream and also an aproderm oat cream.

I don’t feel like any have really worked yet and I’m abit nervous about using the steroid cream Because of the possible side effects.

Michelle my triggers sound exactly the same as yours! I always feel so itchy in bed and with certain clothes on.

I really hope it’s not gvhd :frowning:

I have a clinic appointment in a few weeks I will definitely ask about the shower cream!

I have mentioned a few times (probably the last 3 appointments) (I have 1 a month) about my skin and my worries about it being gvhd- how do you get diagnosed with it? Is it like a test or just a diagnosis from the looks? Whenever I go to my appointment it’s never looking bad which I think is why they don’t seem too worried about it.

Again thank you all so so so much for your replies this was my first post on here and I’ve always been really nervous to post so thank you for being so nice!!!

8

Hello Lucy

It is good to hear the dialogue is still in process. Your future clinic appointment will be a good opportunity to review things again. There is no one test that diagnosis skin gvhd, i don’t think. There are blood levels that can meassure indicative markers but from my experience it was treated based on what i reported as the rash was not always visible.

In the mean time try keeping as cool as possible. Continuing to keep the team informed of your presentation and what is or is not working. This will help them in deciding next steps as well. It can be very frustrating but sounds like you are doing your best to cope and find a solution.

The topical steroid creams don’t come with side effects like oral steroids but thinning of skin over long term use can be.

It can be helpful to take frequent photos and also write down your symptoms and what triggers it.

I hope you find some releif and future appointments go well.

Best,
Michelle

9

Hello
I am nearly 6 years post SCT for AML and had some relatively minor skin GVHD in the months following the transplant. Tbh much of my skin was pretty friable in that period and I just thought this ‘different patch’ was more of the same, until the clinicians diagnosed it otherwise. It did improve and resolved with some steroid cream. But interestingly although the rest of my skin is now ‘normal’ I seem to get a slight flare up of these raised pink blotches on the same area of my body every 6 weeks or so. It isn’t itchy, but it is obvious to me. But I apply either one or two lots of hydrocortisone cream, which I just buy over the counter….. and it goes, until the next time. There doesn’t seem to be any triggers, except the passage of time. I haven’t queried it with Heath professionals as I don’t see them very often now. I just assume it’s the gvhd, because it’s always identical in place and presentation. I just manage it myself.
Hope it settles for you before too long
Meerkat

10

Hi again Lucy,

Just picking up on the useful tips that people have been giving regarding relief from the itching. I found it really difficult to get to sleep when my skin was dry and itchy, so most nights I had a long soak in the bath with some E45 bath oil in it which moisturised my skin really well and stopped the itching for a period long enough to get some sleep. Just be careful standing up in the bath afterwards as the oil makes the tub really slippy!!

My GvHD got quite severe and I would wake up most mornings with almost a crust of dry skin on my face. My legs were also really itchy and flaky and most days it looked like someone had shaken talcum powder on the bed sheets with a healthy deposit of dry skin flakes. The GvHD also created red baggy skin around my eyes and neck, and my hands and wrists were also quite red.

When it was confirmed as GvHD (I can’t remember whether I had any tests) I was quickly put on oral steroids which were quite effective, combined with a variety of steroid creams. I never found Hydrocortisone strong enough for my skin problems and was prescribed a stronger steroid cream called Betamethosone which worked well. I was also prescribed liquid paraffin cream but rarely used it as it left me feeling really greasy and my clothes stuck to me. I rarely get skin problems now but still have access to Betamethasone under a repeat prescription and usually keep a tube in the house for the occasional dry skin patch.

I hope these tips and those from the others will help you get some relief at from a practical perspective. That will then allow your medical team to confirm whether it is GvHD and establish a course of treatment.

Please keep us informed how you get on with your medical team and let us know what methods you find effective to ease your skin problems.

All the best,

Steve

11

Hi Lucyh1234,
I’m Rachel, Lead Nurse for Anthony Nolan. I’ve read through the forum thread and its clear you’ve been given lots of great advice from others on here. It’s also great that you’ve highlighted the issues with your skin to your clinical team and that you’ve started some treatment for it. It’s not uncommon for GvHD flare ups to occur when immunosuppression is being tapered down, your clinical team will be keeping an eye on your tacrolimus levels and other signs/symptoms to confirm a diagnosis of GvHD, which can take some time. A skin biopsy can be taken to confirm diagnosis in some cases.

The topical steroid cream you have been given shouldn’t cause any side effects and the emollient/moisturiser creams are incredibly effective at managing dry and itchy skin. If the one you have been given isn’t helping, do talk to your clinical team about it, sometimes it can take some tweaking to find one that suits you but the important thing is to apply them regularly, don’t underestimate their use.

It’s completely understandable that you would consider skin GvHD as the likely cause for the rashes you have developed but its also plausible that they are because of an alternative skin condition, such as eczema, as your clinical team mentioned. Keep using the creams, take pictures when you have flare ups and stay in touch with your CNS (as you have been doing) and make them aware if the rash worsens or isn’t improving with the treatment you’ve been given.

I hope it settles soon.
Rachel

12

Thank you everyone so so much for your help! It has been so helpful!!