24 days after.

[Kelly2]

Hi, 24 days after starting the Hydro my platelets dropped from 680 to 281! My haematocrit though is 49, very slight change from 50 before. Instructions are to keep taking the 500mg daily and check again after one month. My γGT is 45, with 40 being the highest. He said not to worry but I do.

What makes my life difficult is the itching which I have very often when dry and less after a shower! Nothing changed there.

Have any of you got rid of itching after treatment?

[S031251]

Hi Kelly

I also have PV and am jak2 positive.

I have been taking hydroxycarbamide for over 3 years and although my bloods are within normal range now the itching has not abated in the slightest. It is the most awful part of PV for me and is a daily occurrence.

I am afraid the drugs don’t rid us of the symptoms just keep bloods normal as possible.

So sorry not to be able to give you a more positive reply.

I do hope you find ways of coping with it you will get lots of help on this site

Wishing you well

Anna x

[Kelly2 in reply to S031251]

Thank you. Actually it isn't all the time. For instance today I didn't have any. And it is not an itch. It's like a pinprick. When I apply a cream it feels better. We will see what happens if and when the HCT drops!

[Ebot]

Hi

Glad the Hydroxy is having such a positive effect on your platelet count. I found it took several months (and an extra Hydroxy once a week) to get all my numbers to normal / near normal range. I continued with venesections for a while. As for the itching it’s more or less abated. I still occasionally get it when I’m rushing to shower and dress but overall it’s not so bad or so regular. Wishing you well.

[MPort]

Hi Kelly,

I bet you are pleased your platelets have reduced. But your HCT is still high. When I was at your stage ie high HCT (I have PV) I had to have many venesections to bring it down to safe level. and I was on Hydrea too. Not all haematologists are aware of the reduced HCT levels for MPNs. Its a bit long to wait for a month to be reviewed and to see if Hydrea has the desired effect. There are published guidelines for HCT levels for PV which you may be able to find on this site or on line which may give you more information.

As regards itching. I am writing this after 13 years with PV and never free of itching after showers. I was itching for months before I was diagnosed even washing hands was insane. Once the HCT was brought down it reduced to happening after shower or bath. So not much swimming!! I sympathise deeply with you. Some people take anti histamines but I haven't tried these much as they make me dopey.

Let us know how you get on.

Mairead

[Kelly2 in reply to MPort]

Hi, I cannot have venesections, none of the doctors has suggested it. Maybe because I have so low iron and ferritin. Fortunately I don't have itching after swimming! That would have made me very sad. We will see what happens. I hope for the best!

[SuekJ]

Hi Kelly,

My platelets dropped dramatically when I started on Hydroxy a year ago, sadly they are now at a higher level than when I started despite increasing the daily dose to 1 gram. For some of us the platelets fight back! I have to start on Anagrelide well as Hydroxy this week as I am now too anaemic to increase the dose further. I have my bloods checked every 2 weeks and I would say my itching has abated since being on medication with post shower being the worst!

Good luck, I hope you remain well!

Best regards

Sue

[Wyebird]

Oh poor you, I’m so lucky I’ve got no itching. I do hope someone can help you. Brilliant need on the platelets and dosage you are on. I do hope it stays that way

[cvita71]

I do find the colder water and a mild baby shower gel helps with itching after showering. It is also important not to rub the skin with a towel, I just put on my robe after a shower and the itching is tolerable.

[Splb3317]

Hi Kelly. I too have PV. As for the itching, I don't know if it works for everyone but I've found there's definitely a connection between changes in temperature and also with friction. The after shower itch is usually there. It lasts for about 10 minutes and for that time I try to distract from it by drying my hair and then applying lots of double base gel to my legs. By then, the itching has gone. At other times, for me it's definitely connected to what I'm wearing. By trial and error, I've found out what fabrics suit me. I go for cotton whenever possible. The other thing is friction. Going shopping for trousers and Jeans is a nightmare , because of the need to try the different pairs on, so taking off one pair and putting on another. The itching after that is intense but only lasts a few minutes after I've finished the trying on. So, for me, friction is a huge factor.

Change in temperature can bring on itching as well, so I try to maintain the same temperature on my arms and legs with what I'm wearing. The itching now is very much under control and noT too frequent.. If I do get a problem and it won't go away I take Cetirizine anti-histamines and find them very good. Although it says on the pack to take only one a day, my GP told me that it is fine to take up to 3 a day as long as you leave a good few hours between each dose.

I hope this helps. My PV presents me with very few symptoms apart from the itching but that is a real issue. I hope all this helps. It would be lovely to hear that at last, your itch is under control.

Kindest regards, Sandra.

[Kelly2 in reply to Splb3317]

I look forward to that too! Thank you.

[S031251 in reply to Splb3317]

Hello Sandra and Kelly

I totally agree that my ‘itching’ is definitely controlled by temperature change and as you say friction (had never thought of it like that) but I suffer just getting dressed and undressed and don’t try things on in shops anymore.

It’s been said many times that

Mpners are all different and respond differently.

I agree Kelly it is more a sting for me rather than an itch - but despite knowing all the tips have had no peace for nearly 6 years and there’s never a day goes by without it - but on the bright side I don’t have many other symptoms.

[Kelly2 in reply to S031251]

It is strange as I had the conviction that this would go away with the treatment. I think that my doctor years ago before I started Hydro, nodded when I asked him if the itching would stop if I started treatment! Maybe he lied to me on purpose not to disappoint me 🤔