My itch has a name – and it’s not Scratchie

BackscratcherThe dreaded itch is well known to most BigD-ers. Most people I know have a trusty back scratcher. Mine is made of bamboo and looks a little like a monkey’s claw. I’ve had it for at least 15 years – maybe 20. The scratching claws are smooth from much work, but they still do the job.

We all know the pleasure of a good scratch.

Most people will tell me it is a phosphate itch. They say my phosphate levels are too high either because I have strayed from my low phosphate diet, or I’m not using my phosphate binders right (ie, just before I eat). And most would be right – especially in the early years of dialysis.

So, after constant efforts on diet and binders, I managed to get my phosphate levels from a little high to excellent. And mostly the itch receded.

Life went on.

But now, after 23 years of dialysis, it seems that the rules have changed. Over the last few years, my itch has come back, despite my phosphate level being pretty good. And along with the itch, tiny bumps of skin started to appear, mainly on my back. “Little warty dots” my doctor called them (the technical term is lesions). They get very itchy and give off much pleasure when I scratch them. And with the excitement of being scratched, they expand (temporarily) until the memory of the scratch wears off.

Over the last couple of weeks, the tiny dots have also started to appear on my neck and chest. While this expanded the opportunities for pleasure scratching, I really didn’t like how things were progressing, so I asked my doctor for a referral to a skin specialist.

I already go to a skin specialist, but he’s into speed consulting. I go into a room, strip off and put on a gown. A few minutes later he steams in, and it’s out with the LED magnifying glass, looking all over me for skin cancers and brushing other things (including my queries) aside. A quick click at the computer and he’s gone. Wam, bam, thank you Maam.

So I decided it was time for a new consultant.

The new guy (and his wife) have just set up practice. He asked me questions, took the time to listen to my answers, then gave my skin a slow once-over. And then he gave me an answer.

For an unknown reason, sometimes people on long-term dialysis can extrude collagen, in the form of tiny, dry fibres out through their skin, usually on the back and chest. The lesions usually begin about pin-sized and with stimulation (scratching) can get up to 6mm (¼ in) in diameter.

Reactive Perforating Collagenosis

Reactive Perforating Collagenosis

It has a name, and it’s a mouthful: Reactive Perforating Collagenosis. Reactive to dialysis, perforating as in pushing up through the skin, collagenosis as in collagen in fibre form.

The DoveMed link has a good, no nonsense article about it: The majority of the cases resolve on their own without any treatment. In severe case, the treatment may include the use of topical creams and moisturizers, phototherapy, and antihistamines for itching.

Cause

Beyond having chronic kidney failure and long-term dialysis, the exact cause is unknown. But the appearance of skin lesions is triggered by trauma, especially scratching(!). And more scratching and cold weather makes the condition worse.

I think, in my heart of hearts, I knew I shouldn’t scratch my itchy back too hard. And sometimes I wondered which came first, the lesions or the scratching.

Now I know.

Treatment

The big one is to completely avoid scratching the affected areas.

But when it gets crazy itchy, the question is how?

Creams

Anti-itch creams like Antroquoril (a moderately strong rub-on corticosteroid) helps stop the itch. It doesn’t treat the cause (what does?), but less scratching helps the spots calm down and maybe fade into the background (maybe).

My skin specialist prescribed it for me, and it’s working.

Phototherapy

If the Antroquoril cream doesn’t make the grade in the longer term, he suggested I line up for the Phototherapy. There are two types:

  1. UVB phototherapy is irradiation with shortwave ultraviolet radiation. To treat the whole body, the patient, undressed, stands in a specially designed cabinet containing fluorescent light tubes.
  2. Psoralen Ultraviolet Light A is a combination treatment, where Psoralen (a light-sensitive drug) in cream form is rubbed on the skin to make it temporarily sensitive to UVA (long wave ultraviolet radiation). The skin is then exposed to UVA. The lamps stay on for increasing lengths of time, starting with about one minute and extending for up to half an hour.

It’s been a couple of weeks since I started the cream and I use it twice a day. There is much less itch (though I need a quick scratch every now and then).

Maybe, if things continue to improve, I’ll be able to retire my trusty back scratcher- or at least hang it out of site.

Dialysis and another itch to scratch

It’s a cold, rainy, wintery day in Melbourne: to be expected since we are at the back-end of winter.  I met Julie at the local patisserie for lunch.  She had a chicken and avocado wrap and I had a ham and salad mini-baguette.  Each followed by coffee.  Sounds pretty normal, but as usual for us BigDers, there is always a little man in my head saying ”Should you be eating this?”.

He is right to ask of course.  Just about everything we eat has the potential to kick us off the straight and narrow.  (more…)

Dialysis: scratch that phosphate itch

I recently discovered that it doesn’t matter how long you have been on the BigD, or when you last read about a healthy kidney diet, you can still fall into food traps that can drive you mad, usually in slow motion.  I thought it would be useful to share.

Over the last month in have received a persistent “Could Do Better” after blood tests:  my Phosphate (phosphorus) was 2.9mmol/L, when acceptable is 0.81 to 1.78mmol/L.  Too much phosphate can be toxic. (more…)

Another way to ditch the Dialysis itch

Sorry about not posting last week.  Every now and then my real job intrudes more than it should.  But I’m back on track this week.

For the last few months, I have been driven mad with itchiness:  my back, neck, shoulders, arms and even thighs.  I’m not talking about a small itch, I’m talking industrial-strength itch.  The kind that wakes you up at night, and makes you scratch like a crazy person (more…)

Dialysis secrets: Resisting forbidden fruit

Every now and then the things we believe intuitively are confirmed by new research and things become a little easier to understand and handle.

Take self-control for example: resisting the many food and drink temptations that assail us BigD club members is a day-to-day struggle:

  • Mmmm Cafe Latte…

    We must avoid foods with lots of phosphate, like pastries, whole grain bread, cola drinks, coffee, chocolate, dairy products, mayonnaise, margarine, egg yolks, peas, lentils, nuts, puddings and gravies, processed meats and too many more.
    (Too much phosphate results in weak and brittle bones, and calcium deposits throughout the body. These usually lead to skin itching [been there, done that], joint pain and eye irritation and sometimes it can lead to unstable heart rhythms and even heart failure.)

(more…)

Dialysis is Like Life, Only More So

The BigD is the original moving feast. One month life is sweet: my brain functions Ok; puncturing is easy, with both buttonholes working; I feel fit and well; my blood pressure is like an athlete’s; my blood work is mostly within the zone; I am sleeping well; I can get out of bed, jog and exercise like I did way back when. On these days I think: “This dialysis is a soda – can I handle it or what?”

Then the next month arrives. Suddenly (more…)