Strategies to Beat Itching in Polycythemia Vera

How Can I Beat the Itchies?

itching in PVcontributed by Paul Jaeger

Paul’s Itch Fix page

I was suffering from itching (pruritis) almost 10 years before my
Polycythemia Vera was diagnosed.  It’s the worst symptom my disease/condition has
brought so far, although the doctor promises death at some point in my future.  I
had to give her $150 to tell me that!

What causes the itching?  Well, it’s still a bit of a mystery (just like the
disease/condition).  Most likely it is from the release of histamines caused by
various stimuli such as air and hot or cold water.  I have also tied my itching
to diet.


One of the best ways to beat itching in MPN may very well be OTC combo of Zyrtec and Zantac (June 2016)

zantac and zyrtec for polycythemia

Here is medical commentary on “Mast Cells and Histamine in MPN Related Itching Explained” – by Kate Newberry, Phd (July 2016)

mast cell in mpn

Figure 1. Schematic of a mast cell and the degranulation process.


Over the last year I have read many techniques for lessening the pain of relentless itching, mostly on the support groups on the world-wide-web.  Many of
the emails that referenced various treatments.  I decided to boil some of this
information down to a list of solutions that many people have been successful
with, so that you wouldn’t have to go wading through 100,000 emails to get some
ideas on how to handle PV’s ugly symptom, pruritis.

My personal favorite solution is a dip in my hot tub.  5 minutes stops the itching dead!
The deal is that the temp has to be set to 106 degrees farenheit.  If the tub temperature is 104 or below then it
aggravates the itching rather than helps it.  And most tubs are limited to 104 max.  You can get an
“over-range” chip to allow you to go higher, but you might need a doctor’s note as the tub manufacturers are worried
about liability.

Here’s the disclaimer:  I am not a doctor.  Some of these
solutions were not prescribed by doctors.  Don’t try anything
without discussing it with your doctor.  These are things that have worked for
some people, but they might be deadly for you!

So, with thanks to the contributors to the MPD support groups, email friends,
and the many sources of information out there on the web, here’s my compilation
of tricks and drugs and hope.

drugsDrugs (Rx and OTC):

Benadryl®(diphenhydramine hydrochloride) Careful. Makes you drowsy100mg of liquid benadryl as soon as an attack begins
Benadryl SPRAY Topical
Claritin® (loratadine) Histamine type I blocker. Several success stories.
Periactin® (cyproheptadine) Stronger than Claritin but is soporific.
Hydroxyurea,Hydrea  (HU) 1000 mg worked beautifully at first, but effectiveness may taper off.Some find it the most helpful of any other measure by far.
Interferon (IFN ) Improvement for some, complete cessation of itch for others.Definite uncomfortable side effects for many.
Aspirin 100mg to 200mg each day has helped some people
Dexamethasone Has given almost total relief.But it is a steroid, so expect some side effects
Neurontin (300-1500 mg daily) helps for some unless it gets very humid, then
forget it.
Naltrexone. 25 mg in the morning and 25 mg at night.  Results may not be seen
for up to 6 weeks
Zonalon (doxepin) For eczema. Eczema is the itch that rashes — so doxepin might minimize
the  itch.A most common side-effect is drowsiness, if you use it on too large a body
areaIt is mostly used to treat depression
Temazepam
Atarax (Hydroxyzine) 50 mgs. has really helped some.  It wipes me out for 36 hours, so I
rarely take it.
Tums EX or equivalent Try this before taking a shower or any other activity that promotes
itching
Cimetidine An H-2 blocker.  Try it half an hour before showering, or right
aftersold mostly as an antacid
SARNA Over the counter lotion, offensive smell at first
Jojoba oil
African Shea Oil/Butter
Sesame Oil
Ozonated olive oil
Respite active ingredients are camphor .5% and menthol .5%
Michael’s PSO/VRL With lemongrass.  Get it from your nearest health food store
Cetirizine “It worked well although it’s a “don’t operate-heavy-machinery” pill”.
Ceterizine is available by prescription in the US but OTC in Germany
Elocom cream “I have used Elocom cream with 0.5% menthol for about 10 years. It is a corticosteroid which I rub into the itching
area once or twice a day. Relief occurs in minutes and so far I have encountered no side effects.”
Zyrtec antihistimine
Chlor Tabs Crush a couple of 4mg chloropheniramine tabs to a powder and add about an ounce of witch hazel. Apply locally.

 

diet and herbal

Diet and Herbal:

Avoid caffeine
Avoid chocolate A stimulant.  It stimulates my itching.
Avoid alchohol Avoid it anyway.
Avoid sugar Sugar creates itching for many, but not for me.
Avoid stimulants Coffee, chocolate
Avoid things that are very spicy
Get tested for long term allergies See Paul’s notes on PV
Fish oil capsules Be VERY careful. There are reports that they can increase your risk of
stroke.
Grape Seed Extract A little anecdotal evidence that it helps.

 

environmentalEnvironmental:

Heating pad (dry heat) Placed on the itching area as needed
Moisturizer After a shower
UVA light treatments 2 or three exposures have helped make a difference. You have to increase
the exposure over time to get the same effect.  When you get to 4 or 5
minutes, you have to stop for a few months and start again at 1 minute.
PUVA Psoralen is used to photosensitize the skin which is then irradiated
with ultraviolet light (UVA)
UVB NB A treatment that shows promise is exposure to UVB NB, where the Narrow
Band is the wavelength near 311 nanometers.
Spa (HotTub) I soak for 5-10 minutes. The tub must be 105-107 (very hot!) degrees,
and total immersion (my head notwithstanding) is necessary. A hot shower or
tub at the same temp doesn’t do it, unless it’s a big bathtub.  See
Paul’s notes on PV.
Soap use emollient skin cleansers instead
Cool showers works for some, disaster for others!
Hot showers a very hot (scalding) shower works for some.
How to Scratch! when I itch I try rubbing in a circle instead of scratching – as gently
as tho I were rubbing a baby’s back.  MAJOR difference!!
Ice water squirt [not spray] a little ice cold water on the affected area
Deoderant!? I use a spray deodorant. I usually spray the inside of may pajamas and
it significantly reduces itching.




 

Comments

  1. Les Lippany says:

    To reduce itching after showering, DO NOT rub the towel only DAB lightly to dry.

  2. I want to thank Paul for the hot tub suggestion. I tried a very hot shower and got the same result. I had been dealing with rash for years before my PV was diagnosed. The hot water home remedy is the only thing that works completely and quickly for me, although low dose aspirin does help also. I adjust the shower temp to as hot as I can stand for as long as it takes me to shampoo my hair. When I checked the temp with a thermometer it turned out to be 110F.

    There seems to be a different mechanism from the standard histamine release. In fact, elevated temperature is supposed to cause histamine release. That may explain the failure of Zyrtec, tepid water temp., etc. to prevent the rash, at least in my case.

    • David Wallace says:

      Thanks for your comment Ron. Glad you found Paul’s hot tub suggestion helpful. I have heard of this working for some other patients as well. Different strategies work better for some than others….I swear by the Zyrtec and Zantac combo which actually helps many folks with gut (GERD) issues too. The fact the we are sharing non-pharma (OTC stuff is light duty) solutions is a big plus!

      David

Check out more resources at MPN Cancer Connection!Click here
error: Content is protected !!