[KeithH17Participant]

This is another note on the itch debate.
I am post 8wks sct and started to itch around the neck which has now spread to my face and scalp.
I remember something similar after my first sct 3yrs ago which also affected my back,shoulders and chest in other words allover and lasted for around 5wks.
It's driving me absolutely mad and keeps me awake at night.
I've tried E45 which eases it for a while but not for long.
I feel like swearing but don't want to be black-balled LOL.
Anyone who has experienced this and from the comments there's quite a few of us will understand what I mean.

Keith.

[KeithH17Participant]

As a footnote to the above post I also have very itchy/dry eyes.
Has anyone else heard of this?

Keith.

[DebsParticipant]

Hi Keith,
I would check with your hospital, but when I had a rash around my neck and collarbone post SCT, my consultant said it was GvHD and that it was a good sign that the transplant had done its job.
Mine has just about stopped now….I am 2.5 months post transplant.
Hope it calms down soon so the swearing can stop 🙂
Take care
Debsx

[KeithH17Participant]

Hi Debs and thank's for your reply.
Was your transplant an allo because I've never heard of GVHD been an issue with Auto sct's?
I had a very similar experience after my first sct and it cleared up after about 5wks.
Maybe it could be a reaction to blood and platelet transfusions, these being foreign bodies but I don't honestly know.

Take care Debs and I'm pleased you're doing well.

Keith.

[MinParticipant]

Keith Peter used to get what they called 'cover' when having transfusions to stop an alergic reaction. Just an anti histamine IV. Might be worth asking about.
Min

[RozParticipant]

Hi Keith

I think Michael got this sort of thing after his SCT I remember him having creams and injections for it…He wasn't allowed out of his room at one bit, but you've gone past that part so just see it as a slight normal hick up.

All the best to you
Love Roz xx

[GlynjParticipant]

Hello my husband has the same symtoms as you he is 2mth post transplant dr said his skin was dehydrated, He gave him some cream .We remember he has had this before when he was on antibiotics,The consultant gave him piriton antihistamine so we are going to see the consultant again.Maybe allergies I think you should see you Dr. Hope it gets better soon

[DebsParticipant]

Hi Keith,
No mine was an auto too, but Gareth Morgan was the one who said he thought it was GVHD….apparently you can get it a bit with auto's too?

Debs x

[wendyduffieldParticipant]

I have got this too, itchy face,scalp,neck and am also a bit spotty and I am about 9 weeks post transplant. Interesting that it could be GVHD even from your own cells back. I take an anti histamine each day and use E45 and try not to let my skin dry out. Otherwise I dont think there is much one can do except try not to itch!

And I do get dry itchy eyes too.

What bothers me more is that I have started getting chronic peripheral neuropathy which my consultant says is a side effect of the velcade although my last dose was at the beginning of June and I didnt get it much at the time. Has anyone else developed PN so long after treatment?

[DebsParticipant]

Hi Wendy
I had my last dose of velcade in June and whilst I'd already got the PN at the time (the reason why I stopped) I have to say that it got much worse afterwards…..it seems a long time after for it to develop but I don't know whether or not that is possible. I know how horrid it is to have it…it feels v dehabilitating but if it makes you feel any better, the right drugs can make you almost forget about it. I started on gabapentin and now have that with nortryptalin and morphine and it works a treat. they may change me to pregablin but I hope if they do, it means I'm on that and nothing else!
Give me a shout if you want to know anything more about meds for it. But don't be too proud to take things…you shouldn't suffer with it.

Take care
Debs

P.S popping your raffle prize in the post tomorrow ….well done!

[KeithH17Participant]

Hi Debs and thanx for your reply.
This is really getting me down at the moment.
I can't stop scratching particulary at night when in bed.
Sue think's she's on a water bed going up and down LOL.
I've tried all sorts of creams and was given Chlorphenamine tablets at my last consultation but my skin is alive as if it was crawling with ants.
At least my bloods are doing well,PP's still falling and that's the main thing.
I've no doubt this will eventually pass and it can't happen soon enough for me.
Hope things are going well for you.

Keith.

[bgrewalParticipant]

Have tried Sedigel (www.sedigel.com)?

[lynericParticipant]

Hi everyone. I'm just over 3mths post SCT & don't have anymore itching. When I did I was told by a friend, whose daughter had similar symtems, to try Pure Aloe Vera gel. This did the trick, calming the itching until it stopped altogether. Got mine from Holland & Barrett, on offer, it's normally between £6 – £7. Hope this helps.

[KeithH17Participant]

Already tried that one and yes it does work very well. There is a better one which has Manuka honey mixed in with the Aloe Vera and a shower gel which supplements it. It does ease the condition but the problem is it keeps returning.

Keith.

[adamsp41Participant]

Hi Keith…can sympathise see my post reply

http://www.myeloma.org.uk/patient-services/discussion-board/side-effects/red-itchy-eyes-post-sct/re-red-itchy-eyes-post-sct1/

hope you find a solution…Phil Jan and Sam

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