Sweets skin disease
 

My hem doctor mentioned that there is a skin condition called Sweets disease that can occur with MDS patients who are neutropenic. I had a strange rash that I hope was a strange late poison ivy.

Anyone ever dealt with this condition?

Paul has patchy rash type things all over him. My understanding is that these are caused by low platelets - perhaps I am wrong and it is the neutrophils so I too will be looking at your responses.

Would you mind if I ask how low Paul's white cells are? I'm interested because my specialist says that G-CSF and Neupogen weren't an option for me as they could increase the blasts as well as the white cells.

Cheryl, no I dont mind you asking. Pauls readings at commencement were WBC 2; Neutrophils 0.35; RBC 2.6; HGB 94. His WBC/Neuts are now in the low range of normal and RBC and HGB are low but more acceptable. Pauls blast cells are only about 1% and he is also hypocellular. With my very limited knowledge not sure if these factors are the reason he is a suitable candidate for growth hormones. This treatment seems to be Pauls only option apart from transplant - and it has been made clear to us that at some he will stop responding.

Hope this helps

Sweet Syndrome
 

Hi, I had sweet syndrome after my first Neulasta shot after my first Dacogen treatment in Feb 2010. Mine was a rash with raised sores...luckily mine was not itchy. It took a couple of months for most of it to go away, and a year or so for some of the sores on my arms and legs - at that point, they were under the skin and didn't have any scabs or anythiing - just a nuisance, not painful or anything. 2 1/2 years later I can tell where two were - you wouldn't notice them. My doctor told me that it happens when the body gets too many white cells all of a sudden.

Kate -
61 - MDS high risk, BMT in January 2011. Currently getting phlebotomies for iron overload (3-4 more to go), and taking tacrolimus and Valtrex. Recently stopped voriconizale.

I get a rash on my scalp that itches and has small pimples and my hem says it is unrelated. I wonder ...

Interesting thread. Bill has been sick for over a year and a half (joint pain, fatigue, fevers and hard chills) but was only diagnosed with the MDS in May of this year. Last October, 7 months before he got that diagnosis, he had this horrible itchy rash all over his body with the exception of the soles of his feet, palms of his hand and gentials, he was covered in red itchy blotches. It lasted for about 2 months. After going to several docs about it, they finally blamed his blood pressure meds...that he'd been on for years. Does make you wonder doesn't it?

My mom also has a rash that causes itchy sores that she says feel deep and like a bee sting. Nothing relieves it but scratching or if she tries to dig it out. Ugh!

Because she also has kidney disease, we've been unable to determine if its related to the MDS, MDS treatment or the kidney disease.

She also complains of an itchy scalp which is also new. The doctor's just say try dandruff shampoo.

We could go to a dermatologist next, but she just doesn't want to deal with yet another doctor's appointment right now.

To MDSPerth
 

MDSPerth - Thanks for responding. Not too many of we Aussies on the forum it seems!

My WCC is lower than Paul's, but hgb and red cells are higher though not normal. I guess we just have to trust our specialists but I'll ask again about treatment for raising my white cells when I see my specialist in Feb. I have a 100% match in my older brother, but transplant was no longer available to me in Sydney once my blasts dropped - other patients are in more dire straits. Will have another BMB in Feb to see what's been going on over the last 9 months while we have been travelling around Australia. I've had an Intragam infusion every four weeks all the way around and have only had a couple of courses of antibiotics in that time so feel very thankful.

All the very best with Paul's treatment.