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Old Mon May 6, 2013, 10:02 AM
MDSPerth MDSPerth is offline
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Join Date: Sep 2012
Location: Perth, Western Australia
Posts: 74
Acute GVHD if the skin

Hi all
My partner Paul underwent a MUD SCT on 4 April and by all accounts was having a good run, being released from hospital by day +16.

Without going into the story in too much detail, unfortunately he was readmitted on day +23 with high a temperature.

His temperature at times peaked at over 40 degrees. During this time he began getting a red raised rash over his head - now bare from chemo. The rash merged together to become really angry total redness and moved down from his head to his face and has worked it's way down his complete body. The heat generated from his body was just like standing next to a heater.

He was on several types of antibiotics but showing no response for about 4 or 5 days. Because he was not presenting in the typical GVHD manner (nothing on hands and feet at that stage) they needed to rule out infection before starting steroids. We were told that steroids can aggravate infection?

We now know that he has acute GVHD of the skin grade 4. His skin is blistered and the blisters are bursting and his skin is peeling off. And i dont just mean little blisters. It continues to work its way down his body joining up from being a rash to a complete covering. It's in his mouth, throat and his eyes are so bad.

The hospital staff are so good trying to make him comfortable and come out the other side. He is on intravenous steroid dose of a now increased 200mgs and he has committed to a trial for mesenchymal stromal cell therapy (MSC) of which he has has one transfusion.

It takes me all my efforts not to burst into tears when I see him. Have any other SCT readers suffered such servere GVHD of the skin and come out the other side. I would appreciate hearing your story to grasp some hope from.

Tonight they were also xraying his chest and taking samples because he his rumbly and coughing up mucus.

Paul has a blog. middysmarrow.wordpress.com

If there is a positive here, his blood counts are excellent!

Thank
Sandi
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Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.
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