Itchy skin

Hi , I had Allo SCTs and yes bad skin issues but this was put down to GvHD.

Have your team said anything about Engraftment syndrome (ES) as this is possible following Auto SCT. Rash and itchy skin is one of the symptoms?

If you have been on Acyclovir and cotrimaxole for the past 14 months and your symptoims are relatively new I would be surprised if it’s these feuds but as I am no expert - who knows.

Whats your team saying?

Sorry to hear of this development. My experience: I developed a likewise unbearable itching based on Graft-versus-Host-Disease. We went through virtually everything available, including a clinical trial of high-dose Prednisone combined with Ofatumumab (Arzerra), another trial of Kadmon KD-025 (oral pill), topical class 1 steroid Clobetasol, Narrow-band UV-B light therapy, P-UVA light therapy and a port placement for 1.5 years of Extracorporeal Photopheresis (ECP). Nothing provided lasting or substantial relief. At the end, the choices were narrowing to Ibrutinib and Ruxolitinib (Jakafi). We went with the Jakafi and I knew within 45 minutes of the first dose that we had arrived at something efficacious. I have about two years on the Jakafi at this point.

The following is only my method of coping. I would not advise others to try it. There are yet times when the itching flares and the only way I have found to moderate it is to take an extremely hot, almost scalding shower followed by a cold rinse. This seems to cause the nerves to fatigue and simply stop responding. Of course, a good lotion is needed after this. It is a struggle, but life has become surprisingly acceptable after all of this.  

Thank you for your reply.  I have been referred to dermatology.  Just thought to see if anyone had experienced similar issues.

I will look up ES though. Have a good day.

K