Hello again Bestbaba

I did a search from the ACOR List Serve archives, and found several thousand posts on the CTCL forum that mentioned itch.

To give you an idea of the sort of postings you'll see, I've copied and pasted some extracts of a recent message that refers to itch below.  This particular lady is suffering from stage 4 Sezary Syndrome - a serious variant of Mycosis Fungoides, and has erythroderma. 

I'm optimistic that you'll get the help you need from the CTCL forum on ACOR Bestbaba.

Regards - Mori

Subject: thank you and my story
 

From: Marcy ...

Date:  Sun, 19 Jul 2015 20:20:36 -0500

In January 2013, at the same time I was experiencing a lot of stress at work, I started itching in the bra line area, and it looked like I was getting dipped in strawberry jelly That began to spread to other areas of my body, mostly bathing suit places, but also on my upper thighs. I went to a chiropractor who recommended cleaning up my food and isolating allergies. I did this and lost weight, but not the skin problems. After waiting months to get in to see a dermatologist, she gave me the protocol for unknown skin issues (Triamcinolone, prednisone for a short course and something else, plus a regime for dry skin). These things helped for a bit. The infernal itching was starting to keep me awake at night.

...

I saw Dr. Reisel on Ash Wednesday of this year and based on the enlarged lymph nodes, the abnormal white blood cell count, whole body erythroderma (is that a word?) and the family history, he diagnosed me on the spot with mature Sezary disease. Of course, he sent the blood out to be tested, and it came back positive. Even at that first appointment, he told me I was to go to Northwestern Memorial Hospital in downtown Chicago, where Dr. Joan Guitart and Dr. Timothy Kuzel ran a CTCL clinic. After getting a lymph node biopsied, CT scans and all that, I had my credentials to see the docs at Northwestern.

Imagine my shock when, on the first visit (March 2015), Dr. Kuzel (oncologist) told me I was stage 4a. I still find it hard to believe. They told me that I would be injecting Interferon 3 times a week and would be receiving photopheresis. This was all completely foreign to me, and it took several weeks for the Interferon to be approved, and two months before the photopheresis was finally scheduled. Along with that, they prescribed Triamcinolone, clobetasol cream and foam, and 40% urea cream for my hands and feet, which were scaling and cracking.

Fast forward to today -- I have been going for photopheresis two days a week, every two weeks. When I asked how long I would have to do this, Kuzel said at least six months, to know whether it has been effective. At my last visit Guitart said, "longer." They told me that they thought this course of treatment was the very best available BUT if my body couldn't tolerate it, that there were many other ways to go. Heck, I want the best, so I am sticking with it. They also added narrow band light treatments (2-3 per week) on the off weeks from photopheresis. That has been tough, because I don't have much of a tolerance. I can just tolerate 45 seconds at this point, after having gone to 1:40 and suffered a lot.

....

During the day:
Keep lotions right at hand for any dryness (it has taken me the longest time to get this through my head)
BioFreeze spray to squirt on to arrest the itching feeling
After-sun gel to put on the red areas that usually feel hot, like sunburn
Cotton gloves to wear at all times
Cotton socks ditto
Drink lots of water (good for many things)
Vinyl examination gloves for dishes or cleaning work, Aquaphor on my hands underneath
Naps when possible
Try NOT to pick at myself

PM:
7 minute bath in warm, not hot water
Leave body wet
Apply CeraVe SA cream everywhere
Alclometasone on my face
Aquaphor on soles and palms, covered by old gloves and socks
White cotton undershirt and non binding undershorts to wear to bed