Husband 3 months in polycaethemia vera on Hydera and aspirin only. Now getting pins and needles in arms, anyone else had anything similar

[Headinthesand]

Is this just the pvr or side effect of hydrea

[ETphonehome]

Hi Headinthesand, What are your husbands blood counts like ?

[Headinthesand in reply to ETphonehome]

Last time we went was 3 weeks ago and they must have been good because for the first time meds stayed at same level and we didn't have to go for a month as opposed to fortnightly

[ETphonehome]

What is a good count for one person can be less good for another.

Your husband needs to discuss his symptoms in depth with his haematologist.

[Hidden]

I was diagnosed with PV around 2 years ago. After taking hydroxy have very frequent almost daily pins and needles in arms and hands.

[Headinthesand in reply to Hidden]

That's reassuring Thx

[Mardi in reply to Hidden]

No pins or needles after 3 years hydrea aspirin

[Geoff_mpnfamily]

Hi headinthesand, I have polycythaemia and frequently get pins and needles in my hands too I also get it on my face head and sometimes legs a feet. Im only on asprin with regular venasections.

Though if he has a red patch thats warm to touch (sometimes a lump too) he should seek medical help. He or yourself can phone haematology for advice.

I hope that helps, God bless u

Geoff

[Headinthesand in reply to Geoff_mpnfamily]

Thank you

[aberbrothock]

Hello Headinthesand, What is Hydrea is it the same as Hydroxyurea? If so I was on it previously and never experienced those symptoms. I am now on hydroxycarbamide 1g for Essential Thrombocythemia (high platelets) and only stay on them until the platelets settle down. I get muscle aches and tiredness when on the medication. Tell your husband to speak to GP about this.

[Headinthesand in reply to aberbrothock]

Thank you

[sand-bog]

Hi Headinthesand, I was diagnosed with PRV JAK2 positive about 3 months ago. Started off taking Hydroxyurea 1000mg daily but for the last 2 weeks have halved the dose to 500mg per day as white cells and platelets are down. See the haematologist again in 2 months but meantime have monthly blood tests. Experiencing t ingling feeling in arms and legs and very tired but otherwiseOK. Hope your husband is feeling better

[Headinthesand]

You sound very similar. We also jak2 positive. We stareTed a 500mg, then 1000,1500, and now 2000 for the last 6 weeks.going back to consultant Friday so maybe he will reduce the dose, that would make hubby very happy. He too has really had no side effects or symptoms except fatigue and really his head telling him the bad bits! Compared to other stories I've seen he has got away lightly for the moment, long may it continue. Thank you