[AmelieParticipant]

John got a sct almost one year ago and he is doing brilliantly except from severe problems with rash and itch almost all over the body.

He has been checked for everything even AIDS, but they can't figure out what is wrong although they have made so many biopsies.

I have written about this problem here before and was told that it has happened to others following a sct, but did it also last that long? John's doctor keeps saying it has nothing to do with the sct, but I don't really trust him since he has no other explanation. They just keep cutting bits of his skin every time he goes there – it has to stop!

I would be gratefull to hear if any of you have experienced or heard about this problem continuing so long time after the sct.

Love Amelie

[AmelieParticipant]

No one? :-/ Can John really be that unique?

[scott9Participant]

Amelie,

I would imagine a lot of people have read your posting. Maybe someone can shed some light on this for you soon. I have just finished my course of treatment and as my kidneys are badly impaired I didn't go for the SCT as the mortality risk was a lot higher for me so I'm afraid I am useless for your enquiry.

Good luck though

Scott

[shirleyParticipant]

Hi Amelie,did John have an auto or allo graph,if he had a donar then he may experience this,i had an allo using my sisters cells,and doing really well,but my hospital wanted Graft verses Host disease,and boy is it kicking in or what,i have very dry skin on my face/ears/chest and a very sore mouth,i've had very bad blood blisters on the roof/sides of my mouth,i have the most ugliest tongue going thats been blistered and white,with the help of going back on the ciclosporin and steriods i'm starting to clear up lovely again,i find e45 cream and dove moisturiser works really well,hope John starts to feel better again soon in the mean time you both take care and have a good weekend best wishes Shirls x x x

[AmelieParticipant]

Thanks for your reply Scott – hope you will do better soon!

[AmelieParticipant]

Hi Shirls, he got an auto so it can't be graft verses host – at least to my knowledge.
Thanks for your reply and get well soon!
Love
Amelie

[comfortablynumbParticipant]

Since my auto graft, I have had skin problems – not as bad as those you describe – but an annoying itch usually starting around the feet and moving around the body in stages. I take an anti-histamine for it which is prescribed.

When I first got home from the hospital, I was very itchy and after showering, my skin would go blotchy red/blue!

To be honest, the doctors haven't seemed that worried about it although they have admitted it is probably a side effect of the SCT.

I hope this helps.

Has John tried anti-histamines?

[AmelieParticipant]

May I ask when was your sct?

No he didn't get any anti-histamines. They have been recommended on this page before and I have mentioned it for him, but apparently the doctors have other ideas 🙁

Since his sct was a year ago they claim it has nothing to do with the skin problems, but I have a strong feeling they are wrong. Therefore I am very interested in knowing how long time ago you got your sct.

Thanks a lot for your help.

[comfortablynumbParticipant]

My SCT was September 2009.

I still take the anti-histamines and it sorts it out.

I get Cetirizine on prescription, but you can buy it over the counter in Boots, etc. It's what sufferers take for hay fever and other allergies. I am not medically qualified to recommend it for John of course, but I hope you can ask his doctor about it.

[hyacinthParticipant]

Hi there, my husband has had a rash since he had his SCT in March 2011.
I wrote a post at that time and people suggested it was possibly shingles.
He was referred to a dermatologist first at one hospital and then at the Churchill hospital where we had the SCT. He has had three different diagnosis ( 1st herpes simples virus 2nd rosacea) but now I think they have got it right. He has a rare skin disease called Eosinophilic folliculitis

[quote][/quote]There are several variants of eosinophilic folliculitis, which is also known as ?eosinophilic pustular folliculitis? or ?Ofuji disease?. The name is due to skin biopsy finding of eosinophils (a type of immune cell) around hair follicles.

All of them present with itchy papules (bumps) or pustules. Eosinophilic folliculitis is rare and more often affects males than females. Variants include:

Eosinophilic folliculitis associated with advanced Human Immunodeficiency Virus (HIV) infection [u](and in consultants's words with people who have a poor immune system or who have had a stem cell transplant)[/u]

What does eosinophilic folliculitis look like?

Eosinophilic folliculitis presents with red or skin-coloured dome shaped papules (bumps) and pustules. It may look rather like acne or other forms of folliculitis. These mostly appear on the face, scalp, neck and trunk and may persist for weeks or months. Less commonly urticarial lesions are seen (these are larger red irritable wheal-like patches similar to urticaria). Palms and soles may rarely develop similar papules and pustules, but in such cases the condition should not be called ?folliculitis? as there are no follicles in these areas.

I am going to inform Myloma UK to see if they have heard of it and can recommend any specialists. Hope this may help

[CarolBradley1Participant]

Hi Amelie
Sorry to reply so late but I have only just read this. I had my SCT in Feb of this year and yes, I am FED UP with my itchy back and my medical team see to think it´s to be accepted – just the result of the Melphalan and resulting very dry skin.
However, I´m going to investigate eosinophilic folliculitis further and see if I can get something to calm it down. Fortunately I only have it now on my shoulders mainly but still, it really does drive me bonkers!
Best wishes to you both.
Love Carol xxx

[AmelieParticipant]

Hi Carol,

I understand you are fed up with it – so is John!

He recently had a very strong reaction towards Aredia or Zometa (he doesn't what they actually gave him 🙁 ), but the doctor says the skin problems he had before that and still has, have nothing to do with that. He also still claims it has nothing to do at all with the mm and the treatment.

It is hard for me to believe – especially since they haven't come up with a diagnosis. OMG it is just a mess 🙁

Hope your doctors are more reasonable.
Love
Amelie

[PerkymiteParticipant]

Just got back on the forum and read this post.

I had my SCT Dec 2010. I get small acne type bumps which are mildly itchy. However, I get only one or two, normally on my forehead and neck and they seem to go as fast as they come so I would not describe it as a rash.

Kindest regards ? vasbyte

David

[CarolBradley1Participant]

Hi Amelie

Luckily my doctor is very kind and sympathetic – it´s just that after my being so poorly I think my itchy back comes rather low down in the order of things to worry about so I´m trying not to worry about it.
Hope things go well.
Love Carol xxx

[RogerParticipant]

Hi Amelie

I too have suffered itching, rashes and blotches over my body, legs and arms after my SCT in Dec 2009. This drove me mad – scratching the itches just made it worse and worse. My local GP prescribed Aquous Cream BP. This I found wonderfully soothing. It relieved the inflamation, stopped the itching and that desparate urge to scratch. As Henry Cooper said " slap in on" – wonderful. It did not cure the problem, but definitely relieved the symptons.:-)

This lasted for 6-9 months and has now gone away.

Love Roger

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