FRUSTRATION

[nodmeister]

Aaaaagggghhhhhhhh... My Haemotologist now thinks I should go to the Dermatologist because of my itching. Have I dreamt it or to MPN sufferers itch a lot??????????????

[Luckynlife]

Hi. Sorry u itch. I was told the high cell turnover in my Polycythemia created extra histamines. I also broke out with small blisters on my face. Which got worse if untreated. My numbers ( blood) were extremely high. Allergy pill twice a day kept me symptom free. I was on Zyrtec . I am on Jakafi now for one year, and all my blood work looks fantastic . Finally able to quit Zyrtec. Skin thing was the last symptom to reverse. My huge spleen is back to normal size too. I was bed bound before Jakafi.

[AndyT]

I think quite a few of us get itching but not sure if it's the ET or Pegasys in my case, as it got worse after starting that treatment. E45 lotion and occasional antihistamine tablets keep it manageable - exposure to sun seems to make it worse...

[tracey13]

Yes itchy skin comes with pv just take an antihistamine tablet!

[nodmeister]

perhaps if I show my Haemo the replies he will actually believe me when I tell him it is a symptom that many get. Already on antihistamine. Never mind another day, time to move on.

[millycat]

We have high histermines which makes us super sensitive, you could be reacting to a particular food because of this. I cannot tolerate red peppers, chilli peppers . It took me 20 years to find the culprit it was a throwaway comment from an A and E Dr after an especially bad reaction ....a lot of people react to something red .......Eureka moment am now much better but still have the itches sometimes and also suffer from migraine, which is also linked to histermines.

[bordeauxgirl]

Hi, I sympathise with you re your itching, I have PV and also suffered from intensive itching , my Haematologist suggested I seek out UVB light therapy treatment , my GP sent me to our local skin specialist who started me on the course at my local hospital , it needs commitment on your part as I had to attend the hospital three times a week for several months but you will have to have the treatment again after about 1 year to 18 months, but it has alleviated the itch to the extent I don't even notice it any more, (little niggles now and then ) If you can get your Haemo doc to send you ,go for it , it will help. Good Luck. June.

[socrates_8]

Hey nodmeister ...

I am a PET/MF candidate in transition, however, I started Interferon (injections every two days), circa 8 weeks ago? and I have developed an irritating case of Pruritus ever since.

Personally, I detest all pharmaceuticals, and therefore have never tried an antihistamine as yet.

**Instead, I decided to remove the original cause for a couple of weeks just to see if my symptoms would modify, and they did!

For a few days there, I almost felt normal, however, my Blood Platelets bounced from 694 back to 851, in two weeks.

As such, of course, I do not recommend trying this risky approach...

The point of the exercise for me was to confirm that it is the Interferon causing my itchy Pruritus, (in my view).

I did not have 'Pruritus' as a symptom prior to diagnosis, or when I was taking HU.

I am now hoping for a med's regime change, perhaps to Anagrelide?

But I need to do a little research first...

Best wishes

Steve

(Sydney)

PS. In Oz, we still cannot access Ruxolitinib, as yet... unless one is first diagnosed as MF. Unlike in some other places in the world where being 'Prefibrotic/MF is adequate etc...

[Mardigras]

Hi Nodmeister,

You are not dreaming. A lot of us itch and it can be really uncomfortable.

I did find that after my bath in the morning, I get a degree of relief from Argan Body Oil. I pat my skin dry and then rub into moist skin and let it absorb. I have found that Almond Oil works almost as well, but is a little more heavy.

I hope it helps you too.

Kind regards,

Marcia