Mylofibrosis diagnosed after an attack of shingles

Hi dear friends would be interested to know if anyone has had shingles with the mylofibrosis my husband had head shingles in November 2012 and further blood tests into February 2013 plus bone marrow tests revealed primary mylofibrosis the shingles head pain is still ongoing to this day the MF has been treated with with ruxalitinib but is no longer effective and have had to have radiotherapy to keep his spleen down also dropped his platelets to 27 and he's anemic had 5 bags of blood to date so it's still on going this is a horrible disease. Love to all kisses xxx

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  • Hi,

    I have PV and developed shingles when i started on Ruxolitinib. I beleive shingles can occur when the immune system is compromised which it is in mosy MPN patients.

    I had it in my head too and its awful and so painful. Unfortunately i know some shingles patients can be left with some residual pain from damage to the nerve endings believe. Im sure you have but if not speak to the GP, i was told if i had any there was some treatment to help but not sure what it was.

    Hope things improve in 2016 for your husband.

    Paul

  • Hi Paul thank yip for your reply frank is on pregabalin 300 mg twice daily for the never ending nerve pain above his right eye The dr said that was all they could do and might go away eventually hm God I hope so it's worse dealing with the shingles pain than than the pmf . His platelets are slowly rising now at 48 but 50 is the guideline so he cannot go back on the ruxo yet that ruxo is a fantastic drug to keep the spleen down and the side effects like itching ans sweating how long have you had Pv. I wish you well for 2016 God bless xx

  • Hi

    diagnosed nearly 3 years ago but pretty certain have had for at least 10 years.

    Paul

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