Photopheresis is finally doing something that I can recognize.

My energy levels are up, even though my red blood cell counts aren’t very impressive. I’m able to do stuff without wanting to sleep all the time.

My right eye, which used to be severely dry, is now finally starting to re-hydrate itself. I don’t really need to put anymore drops in, or any other hydration any more. It’s still not 100 % back to normal but it looks like it’s going that way.

Unfortunately, even though my skin may look better visually, it remains tight, as well as my muscles and tendons. My feet and ankles are still the worst. Flexibility still has not improved. And since I’ve been trying to get off prednisone, I’m noticing that my legs and feet are swelling up by mid-day and it’s painful by the end of the day. I’ve always had that problem with prednisone and I’m not sure I’ve ever been off it long enough that the swelling had stopped on its own. I’d always have to start back prednisone due to GVH flare ups, which would then fix up the edema due to it’s anti-inflammatory effect.

For some reason I find Photopheresis to be really interesting compared to the other stuff I’ve had to go through in the last two and a half years. By no means should you take any of what I’m saying here to be 100% accurate, this is only how I understand ECP and it may or may not be technically correct. Obviously you should discuss with your doctor if you want more clarification or information about this stuff.

Basically, you get hooked up to a machine (like in my previous post) through a simple IV line. The needle is slightly larger than what you may be used to when they simply draw blood in a normal blood test, and its made of steel I believe, and is approximately 1 inch in length, maybe a tad longer. You don’t want to be bending your elbow that much at all with this thing, it could pierce through the other side of your vein or hurt you in other ways…

In any case, the machine draws blood and separates your white blood cells from all the rest (hemoglobin, plasma, etc…) or at least does so as best it can with a centrifuge, also sometimes referred to as the “bowl”. So it draws blood and separates the white cells and keeps them, and then returns to you the rest. It does this about 5 or 6 times (the 6th cycle is a little special so I’m not exactly sure what the difference is) each time keeping your whites aside. Then, when the 6th cycle is complete, a drug is injected into and mixed with the white blood cells, called Methoxsalen. The brand that is used in my case is called Uvadex:

Apparently Methoxsalen comes from a special weed that grows in some parts of the world. What it does is binds to the white blood cells in this procedure, making them sensitive to UVA light. So the next step in the treatment is to finally photo-activate the white blood cells after they’ve been mixed with Uvadex/Methoxsalen.  The whites go into the “S” shaped tray that you see in my previous post (with the YouTube video, and yes, it still looks pink/red even though they are white blood cells), and get a sun tan by closing the lid and turning on the UVA light bulbs for a calculated period of time, which for me seems to be usually 35 mins.

So the white cells mixed with Methoxsalen and finally UVA light causes a reaction that apparently modifies the DNA of the white blood cells. It does some kind of magic that resets their memory, such that when they return to the body they do not consider the host tissue as foreign, but rather begin from scratch, I guess you could say. The idea is to first find a balance so that the GVHD firstly stops progressing, then hopefully with continued treatment maybe enough blood can be “reset” that GVH can be eliminated (crossing my fingers). I wouldn’t even mind having to do this treatment twice a year at one point, I mean, I still consider that to be a cure.

After photo-activation is complete, the cells are returned to your body. The whole process, with this model of machine, takes approximately 4 hours from beginning to end, not including setup time and not including cleanup/unplugging yourself from IV. No bathroom breaks during those 4 hours either! Luckily this machine model only needs one of my arms, and not two IV’s, as some models require. Although I’ve heard those are able to do it faster as they can take and return blood simultaneously.

In theory the most amount of blood that is out of your body at any given time is pretty much identical to a blood donation, but that’s only for a few minutes anyway, since it is returned to you quickly enough. I think in my case it is around 425 ml. Also, I think in my case approximately 80 to 90 ml of my white blood cells are treated each day of treatment. Since it obviously can’t collect only the untreated blood during the forthcoming sessions, I see the math as follows (but could be entirely statistically incorrect):

• After 1st session: 10% of blood is treated, 90% untreated
• After 2nd session: 19 % treated, 81% untreated
• After 3rd session: 27.1% treated, 72.9% untreated
• etc…

Basically each time you are re-treating 10% of treated blood, and treating 10% of untreated blood for the first time. I suppose this means you’d never reach 100% completion, but cell’s don’t live forever, so I’m thinking the small percentage of T-cells that remain to be treated at one point will die off and won’t be able to transmit their memory to new T-cells efficiently anymore since they are so small in population. (It’s MUCH more complicated than this.)

But I’m just a computer engineer here trying to make sense of the world of medicine…