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 when you should be sitting quietly chatting and drinking coffee with friends.  It starts as a little niggle on the thigh or the middle of the back and ends up a roaring itch that won’t stop until you draw blood (well almost).

The first thing I have learned is not to go crazy.  Scratching this kind of itch makes it worse, and it quickly becomes a vicious circle: the harder you scratch, the more it itches.  I have found that the best approach is to scratch a little, then bear the itch for a minute or so, and it goes away.  For a while.

I spoke about it with my nephrologist, who said that it I have too much phosphate in my diet.  And the way to control this is to use phosphate binders like caltrate (calcium tablets you buy off-the-shelf) or a heavier duty med, like Fosrenol.  He upped my dose for each meal to two caltrate and one large Fosrenol.  This is a big dose and should have done the trick.  It didn’t.  All these binders seemed to have very little effect.

I go to a skin specialist about every four months to make sure I have no skin cancers (a bi-product of the meds I take), and I asked him about my itch.  Like everyone else, he said that I had too much phosphate, etc.  However, he did suggest some lotions that can help reduce the itch:  one was a prescription ointment called Celestone (betamethasone valerate), a mild steroid cream to minimise the itch, to be applied once at night before bed.  Another was an off-the-shelf moisturising lotion called Aveeno which I could apply anytime I had an itch.  Finally, he suggested I use QV Intensive Moisturising Cleaner, instead of soap.

These certainly eased the symptoms of the itch, but underneath it was still there.

Then the Unit Manager of my dialysis unit suggested that I talk again to Karen, our dietician.  I had spoken with her before and adjusted my diet to minimise phosphate, but to no avail.  This time however, she asked me about all the meds I was on. After discussing each she asked why I was on Somac (Pantoprazole) antacid/anti-reflux tablets. I told her it was part of my anti-rejection drugs for my transplant.  One of the anti-rejection drugs tended to cause reflux, and Somac minimised its action.  However, I had my transplant removed about four months ago.

Then she told me the critical thing (bless her!): phosphate binders only work if you have enough stomach acid in your stomach.  No stomach acid, no phosphate binding, no matter how many calcium tablets you take.  And Somac was removing/minimising my stomach acid.

Obviously, I stopped the antacids immediately.  Nothing much happened for the first few days, but slowly, over the next two weeks, the itch has started to back off.  It has not gone completely.  I think it is taking time for my stomach acid to return to normal levels and for the phosphate binders to become fully functional.  But I no longer need the night lotion, and I’m using the moisturising lotion less and less.

But I think I am over this hurdle.

So, another hard lesson re-learned: don’t assume.  Don’t assume that your doctor knows everything; don’t assume that because your meds were right six months ago, they are right for now.

Like liberty, the price of ongoing health is constant vigilance.

11 thoughts on “Another way to ditch the Dialysis itch

  1. Greg …how fantastic that the itch is conquered! and as you point out – it’s easy to tick off and ignore the knowns and then unexpectedly to find out that one of them is guilty! enjoy the peace of no marg x x


  2. Hi Greg – I am a renal dietitian in the states and came across your blog – wonderful advice! My question about your itchy situation is, were your phosphorus labs high while you were experiencing the itching? Or was it a mystery? Thank you!


    • Hi Lauren, thanks for your comment. You are right, my phosphate levels were high. In fact, I had difficulty reducing them with calcium binders alone, and I have since gone onto Sensipar (cinacalcet) to reduce my parathyroid hormone levels and get both phosphate and calcium levels to where they should be. I have been on sensipar (and daily then weekly blood tests) for about a month and things are gradually coming right. Happily, the itching (the crazy, drive you cross-eyed itching) is gone. Regards, Greg


  3. Pingback: Dialysis: controlling PTH, calcium and phosphate with Sensipar® | Big D and Me

  4. This is great information. Who would have guessed stomach acid would play a role with binders. A yogurt a day may keep the itch away. Did you sometimes get tiny little bumps that itched? Sometimes, depending on what I eat, I will break out in these microscopic little bumps that itch so bad. Usually in a couple hours, they’re completely gone and so is the itch. It seems to be an ongoing issue. Thanks for your advice. Waiting for a kidney.


  5. Hi Greg my name is Magaly
    I am currently 23 years old and I have been living with kidney failure for 18 years. I am Guatemalan born there but adopted so I live in the states now. I got diagnosed with kidney failure at the age of 5 . I come from a broken family . my father died when I was 3 and my mother had a little issues with alcohol and had to raise my other two sibblings . I guess the pressure of me being sick and her being poor and poor medical treatment got to her that she practically told me to kill my self at the age of 6 so I ran away. I ended up in 4 different orphanages and in the last one is how I met my parents
    Well by the time I got here my heart was so badly damage from high blood pressure and kidney failure that I was going to need a heart transplant too. Well God is so good that he gave me my heart back. I have always done peritoneal dialysis I had a kidney transplant atage 16 but it rrejected at age 18 and now am back on dialysis like I said I always did peritoneal dialysis but recently I had and infection and went to the emergency room and they took 9 hours to give me antibiotics and one of the nurses spill it. So they had to take me off peritoneal and put me on hemo for a while but the infection was so bad that they gave me a lot of antibiotics and I ended up with colitis and severe pain and could not eat or drink for weeks which left me severely weak for hemp I felt like throwing in the towel. I felt done. But I kept pushing and the plan was for me to go back on PD after my abdomen healed but I just had surgery to get my catheter back and they could not put the catheter in! My abdomen was so damage that I might never be able to go back. I am scared because I hate hemo and if that end up being the case o might just quit my fight. I am tired of it. But I was wondering if you had any words of encouragement?


    • Hi Magaly. Boy, what a story. After all you havce been through, I think you will find that once you settle into hemo dialysis your body will stabilise and be strong enough to recover from your infections. So don’t give up, keep going. You are certainly due a break and it should be just around the corner. Keep in touch, Greg


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