a drawing board with rejected lotions and creams but in the middle there is phototherapy as a possible new treatment

Fun with Phototherapy

One of the most miserable symptoms of polycythemia vera (PV) is pruritus or itching. I was pretty desperate when I had my first appointment with the Dermatology Clinic at Wilford Hall Medical Center a year after I had been diagnosed with PV. Nothing I tried had helped alleviate this awful symptom. I had bought almost every lotion and cream available, my bathroom counter looking like an aisle at Walgreens. I had tried prescription creams and oral medication. Nothing, and I mean nothing worked!

Is phototherapy the answer?

I started rattling off everything I had tried to the sympathetic dermatologist. After listening patiently, she said she recommended narrowband UVB phototherapy. I had read some studies and it sounded like it could be a possible solution to the PV itching. Therefore, despite the side effects which might make my rosacea worse than it already was and the distance (at least 45 minutes with no traffic, from home) I would have to travel multiple times a week, I was ready to try it.

She said it might take up to 3 months for it to work which was a little disappointing. However, overall, it sounded like a win-win situation. Not only could it potentially make my itching go away, but the UVB rays would help increase my vitamin D, which was on the low side, and I could get a supervised and “safe” tan just in time for summer! Count me in, I told her!

My first appointment

The phototherapy machine resembled a tanning booth, only you’re standing up instead of lying down. To ensure the rays reached all of my itchy body the dermatologist said I would be naked during the session.

At the time I had recently finished breast cancer treatment. The chemo left my head with peach fuzz. I had also undergone a mastectomy and the dermatologist said it wasn’t a good idea to expose the new incisions to the rays. Therefore, I would wear a sports bra, the same one every time, so the areas that were exposed would remain the same each time.

I would always have the same room to avoid differences in the machine's calibration. The technician handed me goggles similar to ones used in tanning booths. The technician said these are yours. You will keep them in a tray in the room and use them each time. She recommended putting them on my head before getting into the booth so I wouldn’t forget them and then putting them over my eyes before I closed the door.

My time in the phototherapy booth

The timer was set for 32 seconds. She explained that I would start at a really low setting because some parts of my body probably had never seen the sun, like my bald head. The length of time in the booth would increase each time.  The technician showed me how to close the door and said as soon as the door closes the timer would start and the UVB light would come on. The light will automatically shut off when the time is done.

I was a bit apprehensive and a little claustrophobic when I stepped into it and closed the door that first time.  Immediately, I put on my goggles, closed my eyes, and counted to myself until the light went off and the door popped open. I dressed and headed out of the room. I’d like to say that I felt immediate relief, but I didn’t.

So, three times a week, I got into my car and drove the distance to the clinic. It was close to two and a half hours out of each day I had a phototherapy session.

After a few sessions, I mentioned to the tech that my rosacea on my face was getting worse as predicted, so she recommended wearing a pillowcase over my head during the session. I didn't have any itching issues with my face or the rest of my head, so I figured that would work.

Laughing at my experience

I laugh now when I think back knowing I made a rather comical sight during each session. Except for my sports bra, I was naked. My little sun goggles were over my eyes and a pillowcase over my head. I would step into the booth, pull down the googles. Then I would put the pillowcase over my head and tie it up so it wouldn’t cover my shoulders or back.  Of course, at that point, I could no longer see, so I had to feel around for the door handle.  The door was hard to latch so almost every session, I would go to close the door and it wouldn’t catch properly causing the alarm to go off. The tech must have been laughing hysterically on the outside of the room listening to the bang of the door, then the alarm blaring followed by my cussing each time.

So did it help? Well, to some extent. However, I decided the time and long drive wasn't worth the short amount of relief I obtained. So after about four months, I stopped.

For those that are considering phototherapy, don't let my less than positive results keep you from trying it as an option for PV related itching. I've heard of many people that have had great success with this therapy.

Although it was back to the drawing board for me, on the plus side, my Vitamin D was back to normal and I did sport a nice tan the rest of that summer.

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