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.
2024 Update
Polycythemia vera patients suffering from intense itching have long relied on a combination of over-the-counter medications for relief, commonly known as the “Z and Z combo” – Zyrtec (cetirizine) and Zantac (ranitidine). However, in 2020, Zantac faced a widespread recall due to concerns over potential carcinogenic contaminants. This development left many PV patients searching for alternatives to manage their symptoms. In response to the recall, the makers of Zantac reformulated the product, introducing Zantac 360, which contains famotidine instead of ranitidine. Famotidine, like ranitidine, is an H2 blocker but is considered approximately eight times more potent.
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 MPN 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.
Drugs (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 area. It 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
“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.”
Crush a couple of 4mg chloropheniramine tabs to a powder and add about an ounce of witch hazel. Apply locally.
Diet and Herbal:
Avoid caffeine
Avoid chocolate
A stimulant. It stimulates my itching.
Avoid alcohol
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
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.
Environmental:
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.
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
Deodorant
I use a spray deodorant. I usually spray the inside of may pajamas and it significantly reduces itching.
contributed by Paul Jaeger
Drugs (Rx and OTC):
Environmental:
