Itchy Scalp with Anagrelide

[Tinkerbell13]

Wonder if anyone is having similar problems....my scalp is so itchy it keeps me awake at night...and drives me demented in the daytime....practically tearing my hair out, whic h doesnt't help! Nothing seems to stop it, tried cider vinegar etc. Only started since on daily Anagrelide. Hate making a fuss, when people are so seriously affected and shining knights like Jedi make no fuss at all....but would be so grateful to hear from anyone similarly affected, and especially for any tips how to deal with it. Warmest regards to lovely MPN followers. Tinkerbell13

[Scottishterrier]

HI Tinkerbell13

All though i am not on same medication i am hydroxcarbamide night and day i was about tearing my hair out my scalp was so itchy i was due an appointment with consultant but it was his registrar i mentioned to her that as well as the puritis which is due to me being ET jak2+ since 1994 my scalp was so itchy she said she would write to my GP which she did and i got Betnovate scalp application which you put in your hand and massage into your head it is a steroid based liquid it works well you only put it on in the morning

hope this helps

best wishes

ScottishTerrier

[Tinkerbell13 in reply to Scottishterrier]

Hi, so kind to reply so quickly, and will try to get hold of the Betnovate you mention....thank you so much....will let you know how it goes! (Hope it does go!!). Tinkerbell13

[Aime]

Hi Tinkerbell, I tried the head and shoulders itchy scalp shampoo which helped previously to calm my itch. Hope you get peace and calm soon,it’s so horrible. Kindest regards Aime xx😸😸

[Tinkerbell13 in reply to Aime]

That is most helpful, thank you...always reassuring others trod the same path, know don't really want anyone else having this! Love and thanks,

Tinkerbell13

[Raphael_UK]

I get this as well since I’ve been on hydroxy, it’s sooooo annoying.

[Tinkerbell13]

Do you have it night and day....? it is - as you say - so annoying!

[lizzziep]

I'm on Anagrelide and have an itchy scalp, although it is something I have had on and off for years. I have been prescribed Betacap (I think it's the same as Betnovate) it comes in a pointed container so it is easy to squeeze onto the scalp, I also use T-gel shampoo which helps. I'm often seen scratching my scalp and wonder if people think I've got fleas!!

Best wishes

Lizzie

[Tinkerbell13 in reply to lizzziep]

Many thanks for kind tips....someone thought I had nits, seeing me scratching away!! Forgotten I was allergic to Betnovate, so think will need an alternative. Sorry you have had similar problems, but still reassuring not the

only one....do you have other side effects from Anagrelide, too? So helps to compare with others. Best wishes, Tinkerbell

[lizzziep in reply to Tinkerbell13]

I was changed to Anagrelide about 2 and a half years ago after 3 years on hydroxy, the hydroxy caused ulcers on my feet, which didn't clear until I was changed to Anagrelide. When I first went on it I had a few palpitations, but I had been warned about that by the doctor, they gradually faded and now I only get them occasionally, about two hours after taking the capsules. I take 4 a day, 2 in the morning and 2 at night. My platelets have been in normal levels for around 12 months, they never were with the hydroxy. The doctor told me most people are put on hydroxy as that is the cheaper drug, but Anagrelide is more platelet orientated.

Hope that helps,

Best wishes, Lizzie

[Tinkerbell13]

Hi Lizzie, thank you so much for such a helpful reply. You sound as if you are doing well on the Anagrelide. The kind and patient haematologist says she feels very sorry for me, as I am 'in an impossible situation'. If increase Anagrelide, get really bad side effects (we even wonder if have caused mini

stroke symptoms) and if keep on same dose, up go the platelets!) Think doctors here would far rather have a Lizzie on their books....never say I'm a nightmare, but actually I am!

So encouraged by your message, even so, and do thank you and wish you very, very well.

By the way, today, re scalp irritation, was told to make up solution of rosemary and water, boil, then cool, it, and use it as spray on head....seems to be helping a bit! You might like to try it....unless you are a blonde!Tinkerbell